To those of you who are new to my blog, I will be adding to my original post instead of creating new posts whenever I want to add something. When I read a blog, I prefer to start from the beginning and read until I reach the current information. I love this Blogger format, but can't seem to find a good way to have it put my posts after my last ones. So in other words, scroll down to the end to find what I have most recently written.
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Sunday, February 10, 2008
Tuesday, January 22, 2008
Life Gets Serious
Surviving prostate cancer
Greetings to all! I’m not used to opening up my life publicly, but as many of you that have been diagnosed with a serious disease know, your friends and family want to know how you are and how you are dealing with your situation, but don’t always want to ask you directly. I have found it helpful to read journals of others who are fighting cancer, leading me to valuable resources that help me navigate through this thick fog. I’m not going to pretend to know the correct course to take or to have any authoritative knowledge for curing cancer. I’m just opening this up to share my thoughts and give you a more intimate look into what I am experiencing and the paths I chose. This first part of my journal is being written retrospectively since I am just now getting in the mood to write. Later on I will add on and try to write what is current. Please feel free to comment on this blog or email me at texhutch5@gmail.com.
About three or four years ago, I was feeling very depressed, had aches and pains and digestive problems. So I thought it was time to visit my doctor and see if anything was going on. Since my father had been diagnosed with prostate cancer a few years earlier, I thought I better get the DRE (you know…the finger) and my PSA checked. I got scheduled for a colonoscopy as well. Then to top it off, I asked if there were any antidepressants that I could try (per my therapist recommendation). The doctor gave me some samples of Lexapro and instructed me how to use it. That night, I took my first dose and immediately started feeling side effects. I got very jittery and sweaty. For the next several days, I was experiencing these effects but gradually they began do diminish. After a few months, I felt the same as before, so the doc doubled my dosage. That seemed to do the trick. I stopped obsessing about my problems and felt more positive. Heck, I went out and bought an 84 Corvette for a hobby and cool car to drive around in. My results came back from my colonoscopy and everything was clear and my PSA test showed to be 4.0 which is borderline normal. The doctor said to come in every six month to have it checked. Over the next three years, I settled into my new normal and moved on with life.
Fast forward to early March of 2007…I called the pharmacy to fill my prescription of Lexapro, but was told I needed my doctor’s approval before it could be filled. When I called, the nurse said that I needed to come in for my PSA test and other labs since I skipped coming in for over a year. Since my stress had settled down and was feeling good, I was going to ask the doctor to take me off of the anti depressant. So I went in and had the labs done and the doctor gave me a schedule for weaning off of the Lexapro. They said to call in about two days to get my lab results. After a few days I called to make sure everything was ok. The nurse said that everything looked fine, but then said the doctor wanted me to see a urologist as soon as possible because my PSA was at 34! Crap, I didn’t even know what that meant. So the first thing I did was look on the internet to find out how bad a 34 was on the PSA scale. Oh crap! The 34 was real bad! I called a local urology clinic and scheduled an appointment.
That was a day to remember. As I was finding out about my condition and trying to get appointments set up. We got word at work that one of the guys in our work group was killed while driving to work on his motorcycle…a sad event and one that would help me put some perspective on life and what I was about to go through. (More about that later)
A few days later, I found myself bent over in the doctor’s office getting the wave of the finger again (something that is against the laws of nature) and things weren’t normal this time. He said I need to have a biopsy done. Ok…how is that done? Well, the finger wave is nothing compared to this. When I came in for this, the doctor told me to pull off everything from the waist down and then lay on my left side on the table. He and a technician were standing next to a fancy machine with a computer and a video screen. He was holding a wand in his hand, and guess where that was going to go. This wasn’t a magic wand; by the way, it was an ultrasound device with little needles loaded into it. Well, in it goes into what is supposed to be a one way orifice, twisting it around and positioning it…then…ZAP! I just about came off the table. Then more twisting and positioning…Zap again! After about fiver or six times, the doctor said he was about half way finished. Has anyone ever snapped a rubber band against your skin? Imagine someone doing that inside you bung hole. Finally it was over, and I got cleaned up and dressed again. As I left the room, making my way to the waiting room where my wife was, I must have looked like an old bow legged cowboy walking off into the sunset. It felt like I had a sharp jagged rock lodged in my butt!
About a week later, was my appointment to go over the results of the biopsy. I can’t tell you how hard it is to wait several days for results, but there was a lot more of this to come. I didn’t expect anything real serious, thinking that this was probably a false alarm and that I would go home with a prescription or something. The doctor opened up my records and pulled out a sheet which had a diagram of a prostate with gridlines and numbers written on it. The numbers ranged from 7s to 9s. He proceeded to explain the numbers, and it was not good. He was explaining the Gleason scale which zero is good and ten is bad. My numbers were very high which meant that there was a high level of cancer in all twelve biopsy needles. I needed treatment or die. This was a lot to swallow, and I was still relatively in the dark about prostate cancer and how it behaves and progresses. He scheduled me to meet with a surgeon to discuss my treatment options.
A week later, I met with a surgeon that specialized in prostate surgery. He recommended that I have my prostate removed very soon. I asked about other treatments such as radiation or watchful waiting. He explained that radiation would have little effect on a Gleason 8 tumor, and would cause a lot of tissue damage and scaring, which would in turn, make future surgery very difficult. Waiting wasn’t an option either. He said if I don’t do something, I will die. Well, I scheduled surgery for April 19th.
Now I find myself in a room getting prepped for surgery. My wife came in with me to get ready, helping me get my gown on and situated in the bed. The sheets were real warm, and I was given some nice socks to wear. A nurse came in and went over what was about to happen, and started an IV. I was wheeled into the operating room and asked to scoot over onto the table. I was laying on the table just looking around me to see where the DaVinci robot was and looked over at the anesthesiologist working away…then suddenly I woke up in the recovery room! Oh the pain…my bladder was having spasms and cramps and my stomach was puffed up like a balloon. What a rude awakening!! The pain medications they gave me didn’t seem to be very effective because over the next twenty four hours my bladder was having painful spasms almost non stop. Then they wanted me to get up and walk around toting an IV and a bag full of pee. That’s the other thing, when you get this kind of surgery; you get catheterized and get to keep it in for at least two weeks. It gets even better…then you get the catheter pulled out! After the hospital stay, I had a month at home to recover. It would have been hard to go back to work with a catheter attached. Although, there were some advantages, if I needed to pee, I could just kick my leg over into a bush and release the valve…nobody would know what I was doing. But seriously, it wasn’t fun having a tether going from my penis to my ankle. The pain of getting it pulled out was worth it to have my freedom back. Then I got introduced to male guards, because I was leaking. It’s time to change the subject.
After my surgery, I saw my urologist twice during the first month, once to get the catheter out and the second to check my bladder control and healing. On my two month follow up, I had most of my bladder control back and was ready for my latest PSA results. At earlier visits, he said to expect a PSA of zero or close to it since my prostate was now gone. If there was significant PSA then we have a problem and have to start other cancer treatments. He opened my file up and bluntly said that my PSA was 188! This was not good and he called his nurse in to prepare a dose of Lupron. He explained that this would lower my testosterone and keep the cancer from spreading...for the time being. It was difficult to hear that all of the treatments available to me from now on are not curative and will, at best, buy me time. Apparently, I have a very aggressive form of cancer. I was then told to set up an appointment with an oncologist and was scheduled for a round of CT scans and bone scans. They want to see where the cancer has spread to.
At this point, I was wondering how much time I have left and what am I to face. The worst part of this is that it’s not all about me, it’s about my wife and children and our future. I have to go home now and tell them the bad news. I also needed to call my parents and let them know. Both of them are battling cancer and my mother is in the advanced stages of metastasized colon cancer. My poor mom couldn’t speak to me directly for a couple of weeks because it was too hard for her to think about. Strangely enough to me, I wasn’t all torn up or in fear. I occasionally wondered how I would react to a cancer diagnosis, thinking I might be filled with fear. But it really didn’t hit me that way. I don’t fear death in that I may go to hell or become annihilated and that everything is over, only the sudden realization that it may be now as with a heart attack or gun shot. There is a little bit of instinct working to protect our lives in these situations. I firmly believe in the spiritual life or the life after death, and have a curiosity about it. I enjoy reading references in the Bahá’í writings and other religions about the afterlife. Even quantum physics points to a timeless-placeless realm underlying our physical world, which fascinates me. I worry that I haven’t achieved my potential and will meet the Lord empty handed, but trust in his mercy. I really want to do more, if only my emotions and anxious thoughts would get out of my way and let me focus. I want to arrive whole and joyful, not regretful. That is what concerns me the most. My curiosity will be satisfied soon enough. But I understand how my mother feels, because I have children and can’t stand the thought of any of them dying before I do. One thing I have had to face though is the feeling of being cut out of my family’s future. I may not see all of them graduate from school, may not see them married, may not see grandchildren and whom won’t have known me. Will my children miss me too much? I worry about my son not having me as a role model and will he be lonely without me. Or will I fade into family history as only a memory. These are the hard thoughts. At least I have time to prepare and come to terms with all of this. I often think of my coworker Bret who was killed in the motorcycle accident. He left for work that morning and was killed instantly. He was a few years younger than me; his children were younger than mine and didn’t have time to prepare. He lived his life normally right up to the end. If he had known beforehand what was to take place that fateful morning, he might have put life on hold and been gripped with fear. So I feel I must live as though I will live a long life and not put anything on hold for fear of death. I’ll cross that bridge when I get there.
Now I find myself in the midst of the cancer industry, sitting in the waiting room of a large oncology clinic filled with patients. It’s a little unsettling looking at this large building with so many offices, knowing that there must be a lot of sick people around to support such a business…and this is only one clinic among thousands! I felt like I didn’t belong there, but there I was. They called me in and took my picture, probably for a before and after shot or so they could identify me after they were through. My appointment was with a young female oncologist, maybe five years out of college. I was a little concerned about her age and experience, but was grateful that she was able to spend a lot of time explaining my condition and the medications that I was on. She also told me that my life will be limited and that I should start getting my affairs in order. She took note that I didn’t start falling apart and was able to ask mater of fact questions and accept the answers. I asked her “statistically speaking” how long do I have? She said “statistically speaking, about five years”. She explained that Lupron will be effective for about 18-24 month, and then the cancer starts growing without testosterone. Nobody has been able to explain to me why, but somehow testosterone is like throwing gas on a fire, take the fuel away and the fire goes out. How come young men don’t get prostate cancer more than old men? Young men have a lot of the hormone and as we get older, we have less. It seems counter intuitive to me. Or it could be I not getting all of the facts? I recently read an article that points to hormone balance and being estrogen dominant has more to do with it than just testosterone. (Here is a link to the article: http://www.johnleemd.com/store/more_mens_hormones.html )But that is not what I am being told by my doctors. Anyway, after the cancer becomes hormone independent, then they try to reduce the disease with chemotherapy and radiation.
One thing I have found after being diagnosed, most of your friends, acquaintances and well wishers have a special cure they think you should try. Everyone knows someone who went to a special clinic, ate a certain diet or did something that brought about a complete cure of their cancer. Even my Chinese friend in Shanghai told me that cancer was easy to cure and that he would send me some tea. At first this really annoyed me because I was made to almost feel foolish if I didn’t jump up and do what they wanted me to. I don’t usually jump on bandwagons and make impulsive decisions, and I may not take your word for it even if you are my best friend. I don’t want snake oil sold to me. At this point in the process, all I wanted to do is listen to my doctors and follow their directions. After all, they are the ones who deal with disease day in and day out, and according to my faith, I should seek treatment from a skilled physician. They should have the best medicines and treatments know to man, and have my best interests in mind. I asked my oncologist about some of the alternative treatments that were mentioned to me. I was willing to try some of them, but only if it didn’t interfere with my medications. I heard that some herbal treatments can interfere with many medications and didn’t want to make a bad situation worst. She said that most of them wouldn’t hurt, but felt they didn’t really do anything. She said the choice of alternatives was like “the flavor of the day” yesterday was pomegranate juice; today is Avemar or the like. In other words, she said don’t waste your time and money, and they all do cost plenty of money which I don’t have enough of. I decided to follow what my physicians prescribe. She said “see you in three months” and that was that.
Three months went by and it was time for my next flurry of doctor appointments. My oncologist wanted me to get a bone density scan done to see how by bones were holding up. The drug Lupron that I was given to block testosterone, rapidly puts your body into menopause (hot flashes and all) and also causes your bones to lose density the same as with postmenopausal women. A few days later, I had this done and a few days after that, I got the results. It turns out that I already have osteoporosis and the doctor wants me to get an infusion of a drug called Zometa. This is a drug that is supposed to rebuild bones and she said that it might help keep the cancer out of my bones. She believes that prostate cancer may find its way to small bone fractures more easily than healthy bone. I couldn’t believe that my bones were already being affected. Before I went in for the infusion, I told a few friends what the doctor prescribed, and my friend Mike said that he just saw a news story about drugs like Zometa and warned me that people were having some severe side effects from it. He said that people were suffering from jaw bone death! Yea right, probably a bunch of media hype. (More about this later) With that bit of information tucked back in my mind, I went in for the infusion anyway. This was my first experience in the “chemo room”. There were eight rows with six chairs each. That seemed like a lot of chairs, and the nurse told me it often gets busy. Again, that is a lot of sick people and this is only one of many clinics! What I thought was going to be a quick procedure turned into nearly a four hour stay. It wasn’t so bad though, I just sat and watched television while the IV dripped. My arm got a little cold where the fluid was entering, but that was it. When it was over, I went home with no side effects. The next few days were different. On Friday, I started feeling back pain and as the day wore on, it grew worse and I started having chills. It got bad enough that I left work early. By that evening, I was wrapped up in a blanket shivering (during the hot Texas summer) with my body beginning to stiffen and muscles getting very sore. It was like having a very bad flu without the nausea and lasted for about two days.
I then had another appointment with my urologist. He is the one that did the surgery and has been giving me the Lupron injections. During this appointment he suggested that I consider starting chemo. I told him that my oncologist said it wasn’t time for this and that I should wait until the Lupron becomes ineffective. He explained to me that now would be a good time because the cancer cells are more prone to death at this point. But he said to go get more opinions, two or even three or four if needed, then go with the consensus. So his nurse gave me another injection of Lupron and off I went.
I did what he suggested and called another oncology clinic to set up an appointment. I also submitted a self referral to a prominent cancer hospital in Houston. A week or so later I was in the office to consult with the oncologist here in town. I told him what my surgeon had suggested, but he agreed with my other oncologist and stated that there isn’t a consensus on when to use chemo and that Lupron is an appropriate treatment at this point. I felt a sense of confidence in his opinion; since he has been in practice for at least forty years and has seen many protocols come and go. I decided to switch to him and told him so. He ordered a new set of CT and bone scans and labs as well. When I got back to work that afternoon, I received a call from the hospital in Houston, asking me to come for an appointment the next week. I thought that this would be the clincher; having the opportunity to consult with a doctor at one of the nations top cancer hospitals would provide the best information.
Now I am on my way to Houston. My appointment was at 9:00 am and was told to report in at 8:00 am for registration, so I decided to drive the 180 mile trip the night before and get a hotel room. I was a little worried because in the introductory material that they mailed to me, they said to be prepared to stay for up to five business days. That’s a lot of time away from work and a big hotel bill! What are they planning to do to me? Well, I left work early and hit the road. I found myself arriving in the Houston area at about 6:00 pm. I don’t recommend to anyone driving in that city during rush hour…what a mess! The next morning I arrived at the hospital and was almost overwhelmed at its size. I went to the seventh floor of this large building and was amazed that the entire floor was just for prostate and urinary tract cancer. What’s more, this was just one building among many on a very large campus. The idea of cancer as big business is really sinking in at this point. After about a two hour wait, I was finally called in and got registered and some lab work done. They had scheduled me to have CT and bone scans done that same day. I was going to be there getting tests done until 9:00 pm. fortunately, I had just recently had the scans done and didn’t need to do them again. All, I was going to do is consult with a physician and maybe get a new plan going.
The doctor came in and introduced himself. He was in his late thirties and seemed very energetic and smart. He immediately got down to business and started to discuss my condition, scan results and prior treatments. I was a little surprised to find that he was willing to critique the treatment choices my prior physicians made. First of all, he asked why I had a DaVinci robotic surgery done instead of radiation. He said that for Gleason 8 tumor, I should have had radiation done, that this was standard. My urologist said just the opposite! He looked away from me and asked “why do you think he recommended surgery?” I answered with a question…Because he is a surgeon? He had me note that he was looking away (because of some legal or professional reason) and nodded yes. In other words, the surgeon recommended surgery because that is what he does…duh. Then he asked why I was given Zometa. I told him what I have already mentioned, and then he began to tell me about all of those nasty side effects. He said that he doesn’t like seeing his patients spitting out pieces of jaw bone and would not have recommended giving that. Besides, he said that it doesn’t treat the cancer. He agreed with the other oncologists and said the Lupron is “the” treatment and chemo (outside of a study) was not appropriate at this time. Well, what’s done is done and can’t go back and change things now. He wants me to get labs done every two months and just watch the numbers until they begin to rise. Then more scans and blood work and possibly chemo.
I walked away from this meeting more confused than I felt before. Can I trust my caregivers to put my best interest in mind? Or am I at the mercy of big business and of personal and professional biases. I am certain that I would get top notch care and treatments at this place, but I wasn’t given any new hope or treatment plans. My take was that this place is the bastion of cancer orthodoxy. So now I had a decision to make; in whose hands do I want to entrust my care. Based on what this doctor said, I lost trust in my first oncologist. He scared me about the Zometa she prescribed and basically said the reasons she gave for it was not based on any data or evidence. It was risky and unnecessary. I also lost confidence in my urologist when it comes to determining my cancer treatment because his views were unanimously rejected, also because the thought that he may have done premature surgery on me for his own financial gain, or maybe just because of a strong personal bias. You know I did challenge him on the surgery decision before it was done. Some folks on a web based support group told me the surgery would fail and I should get multiple opinions back then. I ignored that and just called him on the phone with my concerns and he vehemently disagreed with the advice I received from the support group. Who should you listen to, a real doctor or some anonymous people on a website? A no-brainer right? Well, the surgery did fail! Maybe I aught to drop this one altogether, I thought. But the oncologist at this hospital told me that I better keep my urologist on board. I may need him later, however, I decided to keep him in his place of expertise and not let him make any cancer treatment plans. Another thing I was considering was the distance to Houston. I can’t see myself having to drive that distance and fight that kind of traffic every time I need to see my doctor. Besides, I can’t afford to stay in the hotels there very often. Also, when and if I get very sick, will I have to stay there…and what about my wife and children? I decided that it’s better to stay close to home. I don’t have a warm fuzzy feeling about basing my treatments so far away. I don’t like going there and I don’t want to be buried there. I think that I can get comparable care at a fraction of the price here (in Houston, they charged me $900.00 for this visit).
Over the past months, I have been a receiving a lot of moral support, best wishes and prayers. One of my dear friends sent my name to the Bahá’í Universal House of Justice in Haifa to be added to their prayer list. What an honor to have a divine institution such as this pray for me! When she informed me of this, we agreed to keep watch for a sign from God…a really BIG sign. In the meantime, I was reading a most interesting and detailed blog of a man with prostate cancer(see JC's website on my favorite links). He had a similar diagnosis and initial treatment plan, but was about one year ahead of me. He is a little older than me, I’m 48 and he is 55 or so, but both of us relatively young for prostate cancer. So I was able to read the good, bad and ugly of what I may encounter. In his blog, he discovered a lot of information about nutrition and possible triggers for cancer. After almost dying a year ago, he changed his diet and started incorporating some alternatives into his routine and is cancer free today. One of the books he recommended was Out Smart Your Cancer by Tanya Harter Pierce. In it, she discussed several alternative cancer cures that have been used over the past 100 years, but that have been suppressed for one reason or another by the FDA, AMA, NCI and other agencies. If what she says is true, some of these agencies that were established to protect us have been corrupted by money from pharmaceutical companies and the food industry. If you think about it, the pharmaceutical and food companies are huge and publicly owned. Decisions are made to increase value to the shareholders. Who are the shareholders? Not you and me, but financial institutions that buy huge blocks of stock. If you have a cure for cancer that is made from common herbs or foods, nobody can make tons of money from it, so big companies are not interested. For a possible cure to make it through the FDA approval process, you need to invest about a billion dollars. Unless you are one of the richest people in the world, you’re not going to be able to do that. In fact if you don’t go through the process, you can’t promote or sell your product as a cancer cure. You can go to jail if you do. Thus the dilemma! Read the book, it makes you think.
Now I am beginning to be more receptive to alternative treatments. The big problem now is to decide which one to focus on. In the aforementioned book, I read a chapter about a German biochemist named Johanna Budwig who did a lot of research into fats and oils. I’m not going to go into detail here because you can go to the library and read about her, but she found about the dangers of processed fats that were being use in the food industry to preserve foods. She spoke out about it and got fired from her job because here boss had an interest in the margarine industry. She spent the rest of her life writing books and treating patients with her oil protein diet which consists mainly of adding flax oil and cottage cheese to their diet and eating fresh unprocessed foods. There are many testimonials from patients that she cured their cancer (many or who were in the advanced stages). I mentioned her because she had very impressive credentials and was not a quack. She was nominated by her peers seven times for the Nobel Prize and was suppressed by big business. There is a lot to choose form, but because of its simplicity and low cost, I have started incorporating some of the Budwig diet into my daily routine. Since she also was able to treat psoriasis with her diet, something I have suffered from for over twenty years, I can use this as marker to see if it is working or not. I can honestly say after adding the flax and cottage cheese to my diet for a month now, my psoriasis is going away! Drug companies would have a hard time trying to bottle that and sell it. Don’t get me wrong, I’m not against the drug companies, but I think everything has its niche. I thank God for some of the medications me and my family received. Some of us may not be here today if not for antibiotics and such. I’m just suspicious that shareholders best interests come before those of us with cancer.
A few weeks ago, I had a dream. For some reason, I felt compelled to recount it to my friend that sent my name to the Universal House of Justice to be included on their prayer list. This is what I wrote to her:
Dear soothsayer,
Last night I dreamed a dream…in it there was a box with neatly placed objects…I watched as someone was pouring a sweet substance into the box…I was concerned about the box being filled with this and the objects being covered…but I was told that no matter how it is packaged, this is from the Universal House of Justice. Methinks the prayer has been prayed….and am awaiting the BIG sign.
Your dream’n brother
A few days later she called and said “that’s the sign!” It surely seems symbolic and can be interpreted in different ways. I think the neatly placed objects are either treatment choices or possibly people on the prayer list and the sweet substance is the prayers that surround us. I felt that what ever course I chose to take, it would be ok and I would be surrounded by the loving protection of God. In a mystical way this gives me confidence to move forward with alternative treatments and orthodox treatments (as needed).
It’s now late January 2008 and in a few weeks I have another flurry of doctor appointments. At the advice of my friend, I scheduled an appointment with a nutritional oncologist. I am hoping to learn what I need to do with my diet based on real expertise. Once upon a time, years ago I cured myself of ulcerated colitis with herbs and diet. If you have ever suffered from this, you know how nasty it is, and I had been suffering for months. I learned then to read as much as I can about the condition, what triggers it, what is suggested for treatment and then try to find a common denominator from different sources. In this case, I read books about herbal treatments, medical reference books and books on nutrition. My diagnosis came after a biopsy and an examination with a sigmoid scope, then was prescribe a drug called sulfasalazine. It was one of those drugs that treat symptoms, but not the cause. I didn’t like the idea of having to perpetually take drugs with side effects. So I looked for an alternative. I found that diet was the common denominator. I had to stop drinking coffee and sodas, eating doughnuts and such, fatty meat, and eat less foods that are acid producing. Also, I found that goldenseal was used for healing in the bowels. So I made my plan and ate things like rice, beans, chicken, fresh veggies and fruit, and then took a few capsules of goldenseal every day. Within and week, my symptoms were gone, and when I went in for my two week follow up and told the doctor what I did and that I didn’t take his pills, he was very skeptical. He didn’t think diet had much to do with it, but didn’t know what really caused it and that there isn’t a cure. I should expect it to return from time to time. Well, it is fifteen years later and no relapse. When I went in for a colonoscopy a few years ago, nothing at all was found and the doctor thought I had been misdiagnosed. So I know for myself that when medical doctors say something can’t be cured, that doesn’t mean that it can’t be cured. They can’t cure it because it is beyond their training and field of expertise.
This pretty much brings this journal current as of January 22, 2008. From this point on, I will try to add to this as new developments occur. In February, I will be seeing a nutritional oncologist, my regular oncologist and my urologist. Also, I will consult with a Homeopathic practitioner to investigate the possibilities in this field of healing. One of the questions that I hope to get answered is if I can pulse my dose of Lupron. I’m tired of the fatigue, hot flashes and joint pain associated with this treatment. I have heard of studies showing that intermittent dosing can extend its effectiveness. This is what my father’s doctor has prescribed for him. It would be nice to have a vacation from this, get some energy back and see if any alternative treatments can work instead. I’ll keep you posted.
Surviving prostate cancer
Greetings to all! I’m not used to opening up my life publicly, but as many of you that have been diagnosed with a serious disease know, your friends and family want to know how you are and how you are dealing with your situation, but don’t always want to ask you directly. I have found it helpful to read journals of others who are fighting cancer, leading me to valuable resources that help me navigate through this thick fog. I’m not going to pretend to know the correct course to take or to have any authoritative knowledge for curing cancer. I’m just opening this up to share my thoughts and give you a more intimate look into what I am experiencing and the paths I chose. This first part of my journal is being written retrospectively since I am just now getting in the mood to write. Later on I will add on and try to write what is current. Please feel free to comment on this blog or email me at texhutch5@gmail.com.
About three or four years ago, I was feeling very depressed, had aches and pains and digestive problems. So I thought it was time to visit my doctor and see if anything was going on. Since my father had been diagnosed with prostate cancer a few years earlier, I thought I better get the DRE (you know…the finger) and my PSA checked. I got scheduled for a colonoscopy as well. Then to top it off, I asked if there were any antidepressants that I could try (per my therapist recommendation). The doctor gave me some samples of Lexapro and instructed me how to use it. That night, I took my first dose and immediately started feeling side effects. I got very jittery and sweaty. For the next several days, I was experiencing these effects but gradually they began do diminish. After a few months, I felt the same as before, so the doc doubled my dosage. That seemed to do the trick. I stopped obsessing about my problems and felt more positive. Heck, I went out and bought an 84 Corvette for a hobby and cool car to drive around in. My results came back from my colonoscopy and everything was clear and my PSA test showed to be 4.0 which is borderline normal. The doctor said to come in every six month to have it checked. Over the next three years, I settled into my new normal and moved on with life.
Fast forward to early March of 2007…I called the pharmacy to fill my prescription of Lexapro, but was told I needed my doctor’s approval before it could be filled. When I called, the nurse said that I needed to come in for my PSA test and other labs since I skipped coming in for over a year. Since my stress had settled down and was feeling good, I was going to ask the doctor to take me off of the anti depressant. So I went in and had the labs done and the doctor gave me a schedule for weaning off of the Lexapro. They said to call in about two days to get my lab results. After a few days I called to make sure everything was ok. The nurse said that everything looked fine, but then said the doctor wanted me to see a urologist as soon as possible because my PSA was at 34! Crap, I didn’t even know what that meant. So the first thing I did was look on the internet to find out how bad a 34 was on the PSA scale. Oh crap! The 34 was real bad! I called a local urology clinic and scheduled an appointment.
That was a day to remember. As I was finding out about my condition and trying to get appointments set up. We got word at work that one of the guys in our work group was killed while driving to work on his motorcycle…a sad event and one that would help me put some perspective on life and what I was about to go through. (More about that later)
A few days later, I found myself bent over in the doctor’s office getting the wave of the finger again (something that is against the laws of nature) and things weren’t normal this time. He said I need to have a biopsy done. Ok…how is that done? Well, the finger wave is nothing compared to this. When I came in for this, the doctor told me to pull off everything from the waist down and then lay on my left side on the table. He and a technician were standing next to a fancy machine with a computer and a video screen. He was holding a wand in his hand, and guess where that was going to go. This wasn’t a magic wand; by the way, it was an ultrasound device with little needles loaded into it. Well, in it goes into what is supposed to be a one way orifice, twisting it around and positioning it…then…ZAP! I just about came off the table. Then more twisting and positioning…Zap again! After about fiver or six times, the doctor said he was about half way finished. Has anyone ever snapped a rubber band against your skin? Imagine someone doing that inside you bung hole. Finally it was over, and I got cleaned up and dressed again. As I left the room, making my way to the waiting room where my wife was, I must have looked like an old bow legged cowboy walking off into the sunset. It felt like I had a sharp jagged rock lodged in my butt!
About a week later, was my appointment to go over the results of the biopsy. I can’t tell you how hard it is to wait several days for results, but there was a lot more of this to come. I didn’t expect anything real serious, thinking that this was probably a false alarm and that I would go home with a prescription or something. The doctor opened up my records and pulled out a sheet which had a diagram of a prostate with gridlines and numbers written on it. The numbers ranged from 7s to 9s. He proceeded to explain the numbers, and it was not good. He was explaining the Gleason scale which zero is good and ten is bad. My numbers were very high which meant that there was a high level of cancer in all twelve biopsy needles. I needed treatment or die. This was a lot to swallow, and I was still relatively in the dark about prostate cancer and how it behaves and progresses. He scheduled me to meet with a surgeon to discuss my treatment options.
A week later, I met with a surgeon that specialized in prostate surgery. He recommended that I have my prostate removed very soon. I asked about other treatments such as radiation or watchful waiting. He explained that radiation would have little effect on a Gleason 8 tumor, and would cause a lot of tissue damage and scaring, which would in turn, make future surgery very difficult. Waiting wasn’t an option either. He said if I don’t do something, I will die. Well, I scheduled surgery for April 19th.
Now I find myself in a room getting prepped for surgery. My wife came in with me to get ready, helping me get my gown on and situated in the bed. The sheets were real warm, and I was given some nice socks to wear. A nurse came in and went over what was about to happen, and started an IV. I was wheeled into the operating room and asked to scoot over onto the table. I was laying on the table just looking around me to see where the DaVinci robot was and looked over at the anesthesiologist working away…then suddenly I woke up in the recovery room! Oh the pain…my bladder was having spasms and cramps and my stomach was puffed up like a balloon. What a rude awakening!! The pain medications they gave me didn’t seem to be very effective because over the next twenty four hours my bladder was having painful spasms almost non stop. Then they wanted me to get up and walk around toting an IV and a bag full of pee. That’s the other thing, when you get this kind of surgery; you get catheterized and get to keep it in for at least two weeks. It gets even better…then you get the catheter pulled out! After the hospital stay, I had a month at home to recover. It would have been hard to go back to work with a catheter attached. Although, there were some advantages, if I needed to pee, I could just kick my leg over into a bush and release the valve…nobody would know what I was doing. But seriously, it wasn’t fun having a tether going from my penis to my ankle. The pain of getting it pulled out was worth it to have my freedom back. Then I got introduced to male guards, because I was leaking. It’s time to change the subject.
After my surgery, I saw my urologist twice during the first month, once to get the catheter out and the second to check my bladder control and healing. On my two month follow up, I had most of my bladder control back and was ready for my latest PSA results. At earlier visits, he said to expect a PSA of zero or close to it since my prostate was now gone. If there was significant PSA then we have a problem and have to start other cancer treatments. He opened my file up and bluntly said that my PSA was 188! This was not good and he called his nurse in to prepare a dose of Lupron. He explained that this would lower my testosterone and keep the cancer from spreading...for the time being. It was difficult to hear that all of the treatments available to me from now on are not curative and will, at best, buy me time. Apparently, I have a very aggressive form of cancer. I was then told to set up an appointment with an oncologist and was scheduled for a round of CT scans and bone scans. They want to see where the cancer has spread to.
At this point, I was wondering how much time I have left and what am I to face. The worst part of this is that it’s not all about me, it’s about my wife and children and our future. I have to go home now and tell them the bad news. I also needed to call my parents and let them know. Both of them are battling cancer and my mother is in the advanced stages of metastasized colon cancer. My poor mom couldn’t speak to me directly for a couple of weeks because it was too hard for her to think about. Strangely enough to me, I wasn’t all torn up or in fear. I occasionally wondered how I would react to a cancer diagnosis, thinking I might be filled with fear. But it really didn’t hit me that way. I don’t fear death in that I may go to hell or become annihilated and that everything is over, only the sudden realization that it may be now as with a heart attack or gun shot. There is a little bit of instinct working to protect our lives in these situations. I firmly believe in the spiritual life or the life after death, and have a curiosity about it. I enjoy reading references in the Bahá’í writings and other religions about the afterlife. Even quantum physics points to a timeless-placeless realm underlying our physical world, which fascinates me. I worry that I haven’t achieved my potential and will meet the Lord empty handed, but trust in his mercy. I really want to do more, if only my emotions and anxious thoughts would get out of my way and let me focus. I want to arrive whole and joyful, not regretful. That is what concerns me the most. My curiosity will be satisfied soon enough. But I understand how my mother feels, because I have children and can’t stand the thought of any of them dying before I do. One thing I have had to face though is the feeling of being cut out of my family’s future. I may not see all of them graduate from school, may not see them married, may not see grandchildren and whom won’t have known me. Will my children miss me too much? I worry about my son not having me as a role model and will he be lonely without me. Or will I fade into family history as only a memory. These are the hard thoughts. At least I have time to prepare and come to terms with all of this. I often think of my coworker Bret who was killed in the motorcycle accident. He left for work that morning and was killed instantly. He was a few years younger than me; his children were younger than mine and didn’t have time to prepare. He lived his life normally right up to the end. If he had known beforehand what was to take place that fateful morning, he might have put life on hold and been gripped with fear. So I feel I must live as though I will live a long life and not put anything on hold for fear of death. I’ll cross that bridge when I get there.
Now I find myself in the midst of the cancer industry, sitting in the waiting room of a large oncology clinic filled with patients. It’s a little unsettling looking at this large building with so many offices, knowing that there must be a lot of sick people around to support such a business…and this is only one clinic among thousands! I felt like I didn’t belong there, but there I was. They called me in and took my picture, probably for a before and after shot or so they could identify me after they were through. My appointment was with a young female oncologist, maybe five years out of college. I was a little concerned about her age and experience, but was grateful that she was able to spend a lot of time explaining my condition and the medications that I was on. She also told me that my life will be limited and that I should start getting my affairs in order. She took note that I didn’t start falling apart and was able to ask mater of fact questions and accept the answers. I asked her “statistically speaking” how long do I have? She said “statistically speaking, about five years”. She explained that Lupron will be effective for about 18-24 month, and then the cancer starts growing without testosterone. Nobody has been able to explain to me why, but somehow testosterone is like throwing gas on a fire, take the fuel away and the fire goes out. How come young men don’t get prostate cancer more than old men? Young men have a lot of the hormone and as we get older, we have less. It seems counter intuitive to me. Or it could be I not getting all of the facts? I recently read an article that points to hormone balance and being estrogen dominant has more to do with it than just testosterone. (Here is a link to the article: http://www.johnleemd.com/store/more_mens_hormones.html )But that is not what I am being told by my doctors. Anyway, after the cancer becomes hormone independent, then they try to reduce the disease with chemotherapy and radiation.
One thing I have found after being diagnosed, most of your friends, acquaintances and well wishers have a special cure they think you should try. Everyone knows someone who went to a special clinic, ate a certain diet or did something that brought about a complete cure of their cancer. Even my Chinese friend in Shanghai told me that cancer was easy to cure and that he would send me some tea. At first this really annoyed me because I was made to almost feel foolish if I didn’t jump up and do what they wanted me to. I don’t usually jump on bandwagons and make impulsive decisions, and I may not take your word for it even if you are my best friend. I don’t want snake oil sold to me. At this point in the process, all I wanted to do is listen to my doctors and follow their directions. After all, they are the ones who deal with disease day in and day out, and according to my faith, I should seek treatment from a skilled physician. They should have the best medicines and treatments know to man, and have my best interests in mind. I asked my oncologist about some of the alternative treatments that were mentioned to me. I was willing to try some of them, but only if it didn’t interfere with my medications. I heard that some herbal treatments can interfere with many medications and didn’t want to make a bad situation worst. She said that most of them wouldn’t hurt, but felt they didn’t really do anything. She said the choice of alternatives was like “the flavor of the day” yesterday was pomegranate juice; today is Avemar or the like. In other words, she said don’t waste your time and money, and they all do cost plenty of money which I don’t have enough of. I decided to follow what my physicians prescribe. She said “see you in three months” and that was that.
Three months went by and it was time for my next flurry of doctor appointments. My oncologist wanted me to get a bone density scan done to see how by bones were holding up. The drug Lupron that I was given to block testosterone, rapidly puts your body into menopause (hot flashes and all) and also causes your bones to lose density the same as with postmenopausal women. A few days later, I had this done and a few days after that, I got the results. It turns out that I already have osteoporosis and the doctor wants me to get an infusion of a drug called Zometa. This is a drug that is supposed to rebuild bones and she said that it might help keep the cancer out of my bones. She believes that prostate cancer may find its way to small bone fractures more easily than healthy bone. I couldn’t believe that my bones were already being affected. Before I went in for the infusion, I told a few friends what the doctor prescribed, and my friend Mike said that he just saw a news story about drugs like Zometa and warned me that people were having some severe side effects from it. He said that people were suffering from jaw bone death! Yea right, probably a bunch of media hype. (More about this later) With that bit of information tucked back in my mind, I went in for the infusion anyway. This was my first experience in the “chemo room”. There were eight rows with six chairs each. That seemed like a lot of chairs, and the nurse told me it often gets busy. Again, that is a lot of sick people and this is only one of many clinics! What I thought was going to be a quick procedure turned into nearly a four hour stay. It wasn’t so bad though, I just sat and watched television while the IV dripped. My arm got a little cold where the fluid was entering, but that was it. When it was over, I went home with no side effects. The next few days were different. On Friday, I started feeling back pain and as the day wore on, it grew worse and I started having chills. It got bad enough that I left work early. By that evening, I was wrapped up in a blanket shivering (during the hot Texas summer) with my body beginning to stiffen and muscles getting very sore. It was like having a very bad flu without the nausea and lasted for about two days.
I then had another appointment with my urologist. He is the one that did the surgery and has been giving me the Lupron injections. During this appointment he suggested that I consider starting chemo. I told him that my oncologist said it wasn’t time for this and that I should wait until the Lupron becomes ineffective. He explained to me that now would be a good time because the cancer cells are more prone to death at this point. But he said to go get more opinions, two or even three or four if needed, then go with the consensus. So his nurse gave me another injection of Lupron and off I went.
I did what he suggested and called another oncology clinic to set up an appointment. I also submitted a self referral to a prominent cancer hospital in Houston. A week or so later I was in the office to consult with the oncologist here in town. I told him what my surgeon had suggested, but he agreed with my other oncologist and stated that there isn’t a consensus on when to use chemo and that Lupron is an appropriate treatment at this point. I felt a sense of confidence in his opinion; since he has been in practice for at least forty years and has seen many protocols come and go. I decided to switch to him and told him so. He ordered a new set of CT and bone scans and labs as well. When I got back to work that afternoon, I received a call from the hospital in Houston, asking me to come for an appointment the next week. I thought that this would be the clincher; having the opportunity to consult with a doctor at one of the nations top cancer hospitals would provide the best information.
Now I am on my way to Houston. My appointment was at 9:00 am and was told to report in at 8:00 am for registration, so I decided to drive the 180 mile trip the night before and get a hotel room. I was a little worried because in the introductory material that they mailed to me, they said to be prepared to stay for up to five business days. That’s a lot of time away from work and a big hotel bill! What are they planning to do to me? Well, I left work early and hit the road. I found myself arriving in the Houston area at about 6:00 pm. I don’t recommend to anyone driving in that city during rush hour…what a mess! The next morning I arrived at the hospital and was almost overwhelmed at its size. I went to the seventh floor of this large building and was amazed that the entire floor was just for prostate and urinary tract cancer. What’s more, this was just one building among many on a very large campus. The idea of cancer as big business is really sinking in at this point. After about a two hour wait, I was finally called in and got registered and some lab work done. They had scheduled me to have CT and bone scans done that same day. I was going to be there getting tests done until 9:00 pm. fortunately, I had just recently had the scans done and didn’t need to do them again. All, I was going to do is consult with a physician and maybe get a new plan going.
The doctor came in and introduced himself. He was in his late thirties and seemed very energetic and smart. He immediately got down to business and started to discuss my condition, scan results and prior treatments. I was a little surprised to find that he was willing to critique the treatment choices my prior physicians made. First of all, he asked why I had a DaVinci robotic surgery done instead of radiation. He said that for Gleason 8 tumor, I should have had radiation done, that this was standard. My urologist said just the opposite! He looked away from me and asked “why do you think he recommended surgery?” I answered with a question…Because he is a surgeon? He had me note that he was looking away (because of some legal or professional reason) and nodded yes. In other words, the surgeon recommended surgery because that is what he does…duh. Then he asked why I was given Zometa. I told him what I have already mentioned, and then he began to tell me about all of those nasty side effects. He said that he doesn’t like seeing his patients spitting out pieces of jaw bone and would not have recommended giving that. Besides, he said that it doesn’t treat the cancer. He agreed with the other oncologists and said the Lupron is “the” treatment and chemo (outside of a study) was not appropriate at this time. Well, what’s done is done and can’t go back and change things now. He wants me to get labs done every two months and just watch the numbers until they begin to rise. Then more scans and blood work and possibly chemo.
I walked away from this meeting more confused than I felt before. Can I trust my caregivers to put my best interest in mind? Or am I at the mercy of big business and of personal and professional biases. I am certain that I would get top notch care and treatments at this place, but I wasn’t given any new hope or treatment plans. My take was that this place is the bastion of cancer orthodoxy. So now I had a decision to make; in whose hands do I want to entrust my care. Based on what this doctor said, I lost trust in my first oncologist. He scared me about the Zometa she prescribed and basically said the reasons she gave for it was not based on any data or evidence. It was risky and unnecessary. I also lost confidence in my urologist when it comes to determining my cancer treatment because his views were unanimously rejected, also because the thought that he may have done premature surgery on me for his own financial gain, or maybe just because of a strong personal bias. You know I did challenge him on the surgery decision before it was done. Some folks on a web based support group told me the surgery would fail and I should get multiple opinions back then. I ignored that and just called him on the phone with my concerns and he vehemently disagreed with the advice I received from the support group. Who should you listen to, a real doctor or some anonymous people on a website? A no-brainer right? Well, the surgery did fail! Maybe I aught to drop this one altogether, I thought. But the oncologist at this hospital told me that I better keep my urologist on board. I may need him later, however, I decided to keep him in his place of expertise and not let him make any cancer treatment plans. Another thing I was considering was the distance to Houston. I can’t see myself having to drive that distance and fight that kind of traffic every time I need to see my doctor. Besides, I can’t afford to stay in the hotels there very often. Also, when and if I get very sick, will I have to stay there…and what about my wife and children? I decided that it’s better to stay close to home. I don’t have a warm fuzzy feeling about basing my treatments so far away. I don’t like going there and I don’t want to be buried there. I think that I can get comparable care at a fraction of the price here (in Houston, they charged me $900.00 for this visit).
Over the past months, I have been a receiving a lot of moral support, best wishes and prayers. One of my dear friends sent my name to the Bahá’í Universal House of Justice in Haifa to be added to their prayer list. What an honor to have a divine institution such as this pray for me! When she informed me of this, we agreed to keep watch for a sign from God…a really BIG sign. In the meantime, I was reading a most interesting and detailed blog of a man with prostate cancer(see JC's website on my favorite links). He had a similar diagnosis and initial treatment plan, but was about one year ahead of me. He is a little older than me, I’m 48 and he is 55 or so, but both of us relatively young for prostate cancer. So I was able to read the good, bad and ugly of what I may encounter. In his blog, he discovered a lot of information about nutrition and possible triggers for cancer. After almost dying a year ago, he changed his diet and started incorporating some alternatives into his routine and is cancer free today. One of the books he recommended was Out Smart Your Cancer by Tanya Harter Pierce. In it, she discussed several alternative cancer cures that have been used over the past 100 years, but that have been suppressed for one reason or another by the FDA, AMA, NCI and other agencies. If what she says is true, some of these agencies that were established to protect us have been corrupted by money from pharmaceutical companies and the food industry. If you think about it, the pharmaceutical and food companies are huge and publicly owned. Decisions are made to increase value to the shareholders. Who are the shareholders? Not you and me, but financial institutions that buy huge blocks of stock. If you have a cure for cancer that is made from common herbs or foods, nobody can make tons of money from it, so big companies are not interested. For a possible cure to make it through the FDA approval process, you need to invest about a billion dollars. Unless you are one of the richest people in the world, you’re not going to be able to do that. In fact if you don’t go through the process, you can’t promote or sell your product as a cancer cure. You can go to jail if you do. Thus the dilemma! Read the book, it makes you think.
Now I am beginning to be more receptive to alternative treatments. The big problem now is to decide which one to focus on. In the aforementioned book, I read a chapter about a German biochemist named Johanna Budwig who did a lot of research into fats and oils. I’m not going to go into detail here because you can go to the library and read about her, but she found about the dangers of processed fats that were being use in the food industry to preserve foods. She spoke out about it and got fired from her job because here boss had an interest in the margarine industry. She spent the rest of her life writing books and treating patients with her oil protein diet which consists mainly of adding flax oil and cottage cheese to their diet and eating fresh unprocessed foods. There are many testimonials from patients that she cured their cancer (many or who were in the advanced stages). I mentioned her because she had very impressive credentials and was not a quack. She was nominated by her peers seven times for the Nobel Prize and was suppressed by big business. There is a lot to choose form, but because of its simplicity and low cost, I have started incorporating some of the Budwig diet into my daily routine. Since she also was able to treat psoriasis with her diet, something I have suffered from for over twenty years, I can use this as marker to see if it is working or not. I can honestly say after adding the flax and cottage cheese to my diet for a month now, my psoriasis is going away! Drug companies would have a hard time trying to bottle that and sell it. Don’t get me wrong, I’m not against the drug companies, but I think everything has its niche. I thank God for some of the medications me and my family received. Some of us may not be here today if not for antibiotics and such. I’m just suspicious that shareholders best interests come before those of us with cancer.
A few weeks ago, I had a dream. For some reason, I felt compelled to recount it to my friend that sent my name to the Universal House of Justice to be included on their prayer list. This is what I wrote to her:
Dear soothsayer,
Last night I dreamed a dream…in it there was a box with neatly placed objects…I watched as someone was pouring a sweet substance into the box…I was concerned about the box being filled with this and the objects being covered…but I was told that no matter how it is packaged, this is from the Universal House of Justice. Methinks the prayer has been prayed….and am awaiting the BIG sign.
Your dream’n brother
A few days later she called and said “that’s the sign!” It surely seems symbolic and can be interpreted in different ways. I think the neatly placed objects are either treatment choices or possibly people on the prayer list and the sweet substance is the prayers that surround us. I felt that what ever course I chose to take, it would be ok and I would be surrounded by the loving protection of God. In a mystical way this gives me confidence to move forward with alternative treatments and orthodox treatments (as needed).
It’s now late January 2008 and in a few weeks I have another flurry of doctor appointments. At the advice of my friend, I scheduled an appointment with a nutritional oncologist. I am hoping to learn what I need to do with my diet based on real expertise. Once upon a time, years ago I cured myself of ulcerated colitis with herbs and diet. If you have ever suffered from this, you know how nasty it is, and I had been suffering for months. I learned then to read as much as I can about the condition, what triggers it, what is suggested for treatment and then try to find a common denominator from different sources. In this case, I read books about herbal treatments, medical reference books and books on nutrition. My diagnosis came after a biopsy and an examination with a sigmoid scope, then was prescribe a drug called sulfasalazine. It was one of those drugs that treat symptoms, but not the cause. I didn’t like the idea of having to perpetually take drugs with side effects. So I looked for an alternative. I found that diet was the common denominator. I had to stop drinking coffee and sodas, eating doughnuts and such, fatty meat, and eat less foods that are acid producing. Also, I found that goldenseal was used for healing in the bowels. So I made my plan and ate things like rice, beans, chicken, fresh veggies and fruit, and then took a few capsules of goldenseal every day. Within and week, my symptoms were gone, and when I went in for my two week follow up and told the doctor what I did and that I didn’t take his pills, he was very skeptical. He didn’t think diet had much to do with it, but didn’t know what really caused it and that there isn’t a cure. I should expect it to return from time to time. Well, it is fifteen years later and no relapse. When I went in for a colonoscopy a few years ago, nothing at all was found and the doctor thought I had been misdiagnosed. So I know for myself that when medical doctors say something can’t be cured, that doesn’t mean that it can’t be cured. They can’t cure it because it is beyond their training and field of expertise.
This pretty much brings this journal current as of January 22, 2008. From this point on, I will try to add to this as new developments occur. In February, I will be seeing a nutritional oncologist, my regular oncologist and my urologist. Also, I will consult with a Homeopathic practitioner to investigate the possibilities in this field of healing. One of the questions that I hope to get answered is if I can pulse my dose of Lupron. I’m tired of the fatigue, hot flashes and joint pain associated with this treatment. I have heard of studies showing that intermittent dosing can extend its effectiveness. This is what my father’s doctor has prescribed for him. It would be nice to have a vacation from this, get some energy back and see if any alternative treatments can work instead. I’ll keep you posted.
February 10, 2008
Last Friday, I visited a nutritional oncologist and was very impressed! Many of the questions that were on my mind (and wrote about above) were answered. Without me saying a thing, he right away began discussing hormone balance and safe alternative cancer treatments that are being used around the world. The following is the protocol he gave me, and my understanding of how it works:
My Cancer Cure Protocol
In addition to orthodox treatment (Lupron)
Mornings:
Homeopathy remedy (before eating, drinking or brushing teeth also no coffee drinking) for bone marrow health. Every person has a unique remedy, so no details on this… contact a certified practitioner. (This part of my treatment is not from the nutritionist, but from my homeopathy practitioner)
Chrysin 500 mg.: aromatase inhibitor, cortisol reducer, reduces anxiety, increases labido, anti-infalmmitory. This will also help maintain a better testosterone:estrogen ratio without increasing either. Note: the important thing here is to have the right ratio. It’s ok to have low testosterone as long as its ratio to estrogen is correct.
Vitamin D3 5000 mg. once a day. Five days on and two days off. I will take this on the weekdays and off on the weekends. This helps to promote the natural death cycle of cancer cells.
7-Keto DHEA 75 mg. once daily. Increases the production of interleukin 2. This will give me the effect of testosterone without the damaging effects. 7-Keto DHEA is very similar to DHEA, but doesn't convert back into testosterone or estradiol. It will shift me from TH2 to TH1 which is where we all need to be. TH2 is where autoimmune disease occurs.
Ave (Avemar) one packet daily (one hour before or after meals) for a twelve week cycle. It will shift me from TH2 to TH1 and stop the feeding cycle of the cancer cells.
Iron 50 mg. (elemental) and vitamin C no dairy or calcium within an hour of dosage
Evenings:
Artemisinin 1000 mg. take with flax or fish oil and no antioxidants within eight hours. So no juice or teas after noon.
ZMA three capsules at bedtime. This is zinc, magnesium and aspartate. This is to help the testosterone estrogen balance. Also, it will help relax muscle tightness.
Chrysin 500 mg.
As I understand it (and I may revise this as I learn more):
The Homeopathy, ZMA, Chrysin and 7-Keto will have a lot to do with my feeling of wellbeing. They address the negative side effects of Lupron such as anxiety, depression, muscle tightness, joint pain and will give me the effect of having a normal testosterone to estrogen ratio. They will bring my system back into a good balance, increasing the interleukin 2 (which cancer victims are low in), shift me from TH2 (which is where stress, depression and disease reside) to TH1 where health is. The beauty of this is that I can continue my Lupron treatments and don’t have to throw out standard medicine. This all works together. Yes my testosterone will be very low, but the ratios will be corrected and diminish the dangers associated with estrogen and testosterone. All of these will put me in better position to fight cancer.
To kill the cancer, this is where the vitamin D3, Iron, vitamin C, Avemar and Artemisinin comes into play. Cancer cell make perfect copies of themselves each time they divide, whereas normal cells lose something each time they divide…which is what we call aging.
Cancer cells use more glucose and oxygen than normal cells. But to our body, they don’t show up as invaders and therefore our immune system doesn’t go after them and kill them. So the trick is to get the body to be able to recognize the cells as abnormal and eliminate them. This is where the vitamin D3, Iron and C come in. Cancer cells have 15 times more iron receptors than normal cells. What happens when you put a piece of iron out side in the weather? It rusts, or oxidizes. You take the iron with vitamin C so it is absorbed better, the iron attaches to the cancer cells, don’t take any antioxidants for eight hours, the iron oxidizes and cuts off the fuel supply to the cancer, the vitamin D3 helps your system to then identify the cancer cells and bring about a normal cell life cycle and cell death to the cancer. The Avemar is an approved cancer treatment in the European Union which has shown very good results in bringing about cell death to cancer. Artemisinin is the number one drug that has been used for over forty years as a drug resistant malarial treatment. It is safe and has been used my millions of people for malaria. It is now being used to treat cancer as well. Studies show that it is as good and even more effective in killing cancer cells than many of the chemotherapy drugs now in use. Now you may ask; why aren’t these treatments being used in oncology clinics across the country? Once again…big bucks to get it through the FDA. Go to the website of Avemar and you will get a warning window pop up that says this is only for people outside of the US…don’t get scared, the internet police aren’t going to get you…then read some of the many studies that have been done. Also, Google Artemisinin and read those studies as well. These things are well documented. It’s very encouraging and interesting, but sad that our own agencies can’t free themselves from the need for money so to process promising safe treatments more quickly.
As I digest more of the information that I just received, I will add more to this posting and maybe even revise it a little. I didn’t want to wait too long to publish this, because I think it is very important to share this. Please don’t use my protocol without consulting your doctors. This one was tailored for me, but many aspects will probably apply to you if you are fighting cancer as I am. Hopefully this will give you some good information to research and provide you with questions to bring to your doctors. If you have any questions about what I have posted please feel free to email me. Also, I would be glad to send a link to my nutritionist’s brochure if you are interested in setting up a consultation with him.
As I walked back to my car after my appointment, I noticed that I was carrying a box of neatly placed objects (my box of medicine that he gave me) ...my dream.
February 16, 2008
Over this past year, I have been trying to figure out what triggered my cancer. It's believed that genetics has something to do with it, my father has it, but he was about 60 years old and has a less aggressive form. As far as I know, me and him are the only ones in the family to have prostate cancer. My gut tells me that there is something else involved. One of the things in the back of my mind is the fact that I was taking the antidepressant Lexapro for about three years. I'm the only man in the family(as far as I know) to opt for these pills to help deal with stress. I've looked and looked on the internet for information or studies linking antidepressants to prostate cancer, but found nothing. During my discussion with the nutritionist, we spent much of the time talking about hormone balance and the connection to prostate cancer. He told me that as we age, testosterone lowers, stress can lower it as well, but then I asked if antidepressants can lower our levels and he said they do! Those of us who have taken antidepressants, get our blood checked a few times a year. Guess what the doctor is checking...testosterone! The nutritionist was very confident that there is a connection, but studies haven't been done. He said that he would have to call all of the oncology clinics around the country and find out how many of their prostate cancer victims have taken antidepressants to get the data. Well, all of the pieces of the puzzle are coming together now. I probably had the making for the perfect storm; I was suffering from sever stress, taking an antidepressant, poor diet, a genetic factor, sedentary job and I work in a room with no windows and often see very little sunlight on a daily basis (low vitamin D). For any of you guys reading this...take warning...if you can identify with me on this...you better make some changes. Get plenty of sunlight, reduce your stress without SSRI's, quit the fast food and get excersise.
February 22, 2008
Well, my doctor appointments are finished for the next three to four months, except that I have to go in for another shot of Lupron in March. My appointments with my oncologist and urologist were mostly social visits. Last Friday I met with my oncologist and told me that in three months he will order a CT scan, bone scan, chest x-ray, and more labs. I tried to discuss my meeting with the nutritionist at the clinic and get a feel for how the two will work together, and naively thought there was some crossover in knowledge and experience. But when I pulled a few bottles of supplements out of a bag I was holding, he frankly told me that he doesn’t know what they are for and what they do. I was disappointed, but he reassured me that they do work together and cooperate. At my urologist, they didn’t even bother to take my blood pressure or temperature. The doc came in, opened up my file and told that my PSA was undetectable (great news!) He said to come back in a month for my Lupron shot and then schedule an appointment in four months for my next shot. As we were walking out the door, I asked him about the possibility of intermittent dosing at sometime in the future. He wasn’t very keen on the idea, stating that he feared my PSA would skyrocket again, but said in the future maybe we could try it for two or three months. Since he is the one giving me a treatment that affects my hormones, I asked if he knew what the proper testosterone to estrogen ratio should be in a normal person (information that is hard to find on the internet), and he said that he didn’t know.
This brings me to my latest rant; where are the doctors who have a holistic understanding of human beings and can discern root causes of disease? I am very frustrated that medical professionals in this country work in silos far too often and seldom reach into other areas of science. If I go to a dermatologist with a skin rash; I will given a pill or cream to lessen the symptoms, if I go to a gastroenterologist with bowel problems; I will be given a pill to treat those symptoms, if I go to a doctor with depression; he will give me an anti depressant. What if all of these symptoms stem from one simple root cause? I could be medicated and carved on to death and nothing will be solved! They are all treating symptoms and not trained to look for root causes, whatever they might be!!! I run into similar situations when my car is having problems and I take it to a mechanic for diagnostics, costing me a lot of money in unnecessary parts and labor. After trying to solve a problem with my transmission shifting abnormally, and spending hundreds of dollars in certified shops, I gave up and solved it myself. It turned out to be a simple throttle positions sensor that cost about $30! A transmission specialist will try to sell me a new transmission. How many of us are fighting cancer and other diseases and receiving radical treatments that could have been averted if the root could have been found beforehand? I wish that I could go to a general practitioner with my symptoms, have my lifestyle, diet, working conditions, stress levels, physical and spiritual wellbeing surveyed, my blood thoroughly analyzed, hormones checked, and have him or her put together the puzzle pieces to get a picture of the problem or cause, and then have the knowledge to prescribe a plan of action, which may include referral to specialists, medicine, surgery, physical or emotional therapy, nutrition, or any alternative treatments. We need certified doctors that are at the hub of healthcare and wellbeing knowledge that act without bias as portals to healing. Am I asking too much?
March 3, 2008
Here is a gem of a quote that I would like to share...something to think about deeply:
A friend interested in healing quoted the words of Bahá'u'lláh: "If one is sick, let him go to the greatest physician."
'Abdu'l-Bahá said: "There is but one power which heals -- that is God. The state or condition through which the healing takes place is the confidence of the heart. By some this state is reached through pills, powders, and physicians. By others through hygiene, fasting, and prayer. By others through direct perception."
On another occasion 'Abdu'l-Bahá said with regard to the same subject, "All that we see around us is the work of mind. It is mind in the herb and in the mineral that acts on the human body, and changes its condition."
(Abdu'l-Baha, Abdu'l-Baha in London, p. 94)
March 8, 2008
Yesterday I had blood taken to check my total estrogen levels. My nutritionist wants to see what the levels are and then recommend to my oncologist that I get a prescription for an aromatase inhibitor. These drugs are usually given to women with breast cancer to keep estrogen levels down. He gave me some supplements that are supposed to do the job, but I think the drugs will do a more definite job at lowering my estrogen. The idea is to get the estrogen to testosterone ratio a little wider, which will lessen the side effects of Lupron. Also, yesterday I got another shot of Lupron…so I should be good to go for another four months.
April 2, 2008
I don’t have much to write about this month other than complain about symptoms or side effects. Skip this if you don’t want to hear me belly-aching. Maybe this will make sense later down the road.
After meeting with my nutritionist, I was pretty excited about trying all of the new supplements and hopeful that I would soon be feeling more energetic with less muscle pain. Some of the supplements were supposed to keep my body from converting testosterone over to estrogen, the others were supposed to help relax my body, reduce anxiety. I had a blood test a few weeks ago to check my total estrogen levels and found that it was pretty high. Normally men should have a number between 15 and 30, mine was at 48. So it appears that I have a testosterone to estrogen ratio that is way to tight (74:48). I guess the supplements that are supposed to be aromatase inhibitors aren’t working well. To be honest with you, I think I felt better before the supplements. After the first day of taking them, I started noticing a sweet taste in my mouth, almost like saccharin. After six weeks of this taste, I thought I better look on the internet to see if anyone else has had this. I was getting concerned because it was beginning to annoy me and didn’t seem normal. Resulting from my search, I found a few possible causes; diabetes, ketoacidosis, poor absorption or small cell lung cancer. Ok, none of these sounded very good, so I thought I better ask everyone who is treating me to see if they knew what was going on. My homeopathy practitioner didn’t know… my nutritionist had no idea and neither did my oncologist. My oncologist suggested that I stop the supplements for a week and see if it stops, and then start the supplements up one at a time to see if the taste comes back. It did stop after five days, and on the seventh day I took my morning dose of iron, vitamin c and d, Chrysin and 7-keto…the sweet taste was back. I should have taken them one at a time, but at least I ruled out artemisinin and Ave’ which are the ones that treat the cancer. Now I’m deciding whether to continue with supplements. My back still hurts, in fact it is worse. I feel the pain 24/7 now where before the pills, I mainly felt it in the afternoons and evenings. Also, I feel like I am walking on bruised feet. Throughout this episode, I keep thinking of the dream I had. It’s strange that in it I was concerned about the sweet substance being poured into the box, much like my concern for the sweet taste in my mouth. Maybe I should just relax, loosen my tethers, go with it and see where it leads.
In hopes of getting more energy back, last week I started to exercise. My plan was to get up at 5:00 am on Monday, Wednesday and Friday and do some abdominal, arm and leg exercise. Then I would walk about two miles after lunch with my buddies Bill and Ken. The walking is going great, but I find that my energy is limited. Instead of getting more, I am now running out of it in the evenings. My feet are so sore that it is hard to walk much after I get home from work. I made it though one workout last Monday, but haven’t done that since. I got extremely sore muscles…all over, making it hard to do anything for the entire week. On top of that, same as with walking, my energy was spent for the day, leaving me with little stamina. Maybe when I see my oncologist in May, he will let me try the aromatase inhibitor drug. I’m hoping it will help ease the side effects of my current treatment and put some spring back in my step.
May 15, 2008
Well the results are in from my latest tests and so far, so good. My PSA is still undetectable and according to my bone and CT scans and chest x-ray there is no sign of spread. There was one hiccup though, the doctor ordered a CT scan of my abdomen and pelvis, but he only received a report on my chest and abdomen. It turns out that the nurse goofed up when sending in the order. My doctor was a little ticked when he saw this, and the only thing he could do is try to figure out what happened and then offer me to go in for another scan. Since he left that choice up to me, I decided to skip the scan and wait unit my next round in November. I don’t have any pain in my hips, so I will take the risk and assume that everything is OK. I don’t like having all of those chemicals running through my body and want to keep that to a minimum.
The other thing I was going to discuss with the doctor was trying an aromatase inhibitor drug (the kind women with breast cancer use). After we got past the CT scan screw up, I broached the subject. As I kind of expected, he didn’t know anything about it, had no notes from the nutritionist, and had no idea why I should use the drug. He did take a post-it note and attached it to a piece of paper and said he would investigate. I don’t think I will hold my breath until anyone responds. I’ve had this run around already. I honestly think that I have a very good doctor and nutritionist, but I think the left hand doesn’t know what the right hand is doing. It would be nice if they could shake.
Now that my tests are done and everything is good, I feel I have the green light to finalize some travel plans this summer. I’m going to the holy land on pilgrimage and will be praying in the Holy Shrines of the Bab and Baha’u’llah. I have a bunch of you on my prayer list (those who have contacted me on this blog and some others). If you want to be on my list, please let me know before July and I will pray for your healing and cure.
May 23, 2008
I decided to take the advice of my friend Susan and keep prodding my doctors for an answer about the aromatase inhibitor. It paid off, because I received an answer today. Apparently, my oncologist did talk to the nutritionist after my last visit, but the oncologist decided that since I am still on the Lupron, it wasn’t appropriate to take the drug at this time. However, my nutritionist made an addition to my supplement protocol. He added something called Vital Immunity, one cap in the morning and one at night. Here is the product description:
This product contains patented broccoli seed extracts, along with DIM, Indole 3 Carbinol, and Milk Thistle. Offers immune support, a long lasting anti-oxident, and hormone modulating properties, which may support healthy cell division.
Last week was my final week of Ave' which I took for a three month cycle. Also, he said to stop the artemisinin after six months. Don’t know if any of this is working, but time will tell.
On a slightly different subject, my friend Aniela sent me a link to an article about something called German New Medicine. I have never heard of it before, and I found it very interesting. The doctor who founded this believes that many cancers and other ailments are triggered by sudden unexpected traumas, such as loss of a loved one, divorce, marital infidelity, fear of death, separation from a child…etc. These traumas cause your brain to react in certain ways, triggering a response in different parts of your body and leaves evidence on your brain that can be seen on a CT scan. For healing to take place, there needs to be a resolution to the traumatic event. If it goes unresolved, cancer grows and even spreads. What interests me about this concept is that it has elements that are akin to healing our spiritual being in order to heal our body. Anyway, you will be better off reading about it yourself instead of me trying to tell about it. Here is a link if you are interested: http://www.germannewmedicine.ca/documents/welcome.html
July 23, 2008
Well, I am back from my pilgrimage to the holy land, and I have to say it was the most wonderful experience of my life. Words can’t describe the feelings I felt, my thoughts and the joy of just being there. The serenity of those sacred shrines and the beautiful gardens that surround them is like heaven on earth. There is no better place to unburden your soul. For me the timing of this couldn’t have been better. As you can imagine, I have a lot of things on my mind that I am trying to come to terms with, the least of which is my physical health. That may sound a little strange, but when face to face with my Lord, I was more worried about mine and my family’s spiritual health than my physical health. I can be cured, by miracle or otherwise, but eventually I will lose my physical body anyway. I would rather have spiritual health which lasts forever, than temporary physical health. Don’t get me wrong, I want both and I did pray for healing for myself and all of my family and friends and am willing to leave it in God’s hands. On that note, these are my feeling about my prayers as related to my healing: I have known many good people who have become ill and prayed for a cure, but passed from this world anyway. So many people who are younger, stronger, and more vibrant and with more potential than me, have not been spared. What about all of those children in the world who are starving to death, and all of the people in poor countries who die for lack of medicine or doctors? Am I so special that God would alter the course of nature to let me live a little longer in favor of all of the others? Am I to be more privileged than anyone else in the world? Why wouldn’t God, who can cure all of our ills with a single glance, spare anyone who asks? There must be a higher wisdom, beyond my understanding that determines who stays and who goes. If there is something that he wants me to do, I’m sure I will live long enough to do it. He has the authority to command.
Yesterday I had an appointment with my urologist. It was time to check my PSA and get my next Lupron shot (I hate this stuff). My PSA was again detectable at .1, which is very small, but tells me that the cancer is still present and trying to spread. He tried to make me feel better by saying that I have been doing better than I should, much better than expected because of how aggressive it was spreading after surgery last year. He said we will watch the PSA numbers, and if it starts rising, then I will start taking Casodex to shut down any little bit of testosterone that I might have. Then if the numbers are still rising and showing resistance to treatment, I will probably enter a chemotherapy study.
I have an appointment with my oncologist in one month. I’ll see if the numbers change by then.
October 14, 2008
A few of my friends contacted me lately about updating my blog. I know it has been a while, and it isn’t very interesting to be checking up on friends with stale blogs. But I just haven’t had any new information on my condition. I will go in for another round or scans and tests in the middle of November, and will post the results then. On the other hand, a big part of this quest is the mental or psychological aspects of dealing with prostate cancer, and maybe I should share some more about this.
One of the things I am dealing with is the known progression rate of prostate cancer, and the available treatments. Prostate cancer progresses much slower than other forms and many of the chemo treatments available are designed for faster acting cancers. From what I have read, chemotherapy doesn’t have a good track record of treating prostate cancer and is usually tried when everything else has failed. One study that was completed found that chemotherapy does extend the life of patients, but only by about three months! Here is a link: http://www.cancer.gov/clinicaltrials/results/prostate-and-docetaxel0604
My PSA was 34 before surgery, and after surgery, the cancer was staged at T3a with a Gleason score of 8. Two months later, my PSA was at 188 with lymph node involvement. If all was going well, my PSA would have been zero or close to it. So my prognosis was not good. Here is a link that describes prognosis: http://www.cancerline.com/cancerlinehcp/9898_12093_6_2_5.aspx
As a patient being presented with this outlook and my oncologist telling me that I should get my affairs in order, it is hard to keep that rosy, optimistic sense that this will pass and everything is going to be ok. I have come to terms with this the best I can; that eventually my hormone treatments will fail, radiation will only relieve pain, and chemo might buy me a few more months. For the Star Trek fans, it is like being chased by the Borg. As the large cube shaped ships approach, they announce “resistance if futile…you will be assimilated”. And as the Enterprise crew fires lasers and torpedoes at the Borg ships, the damage that is inflicted is quickly and dynamically repaired as the ships continue to close in. Now those of you that have watched one of these episodes know that the Borg is not all that fast and don’t get angry when attacked, but they are virtually unstoppable because of their ability to adapt, repair and continue their march forward to gobble up and destroy anything they decide to focus on. That is just as scary as a fast and violent attack, but you have more time to strategize. So that is where I am at; being chased by a slow, but relentless attacker. I know its coming and the first volley has been fired (surgery), and the second volley has been fired (Lupron) only setting it back for a time, and the third volley is my supplements. Each time I go in for tests and scans, I wonder if it has arrived at my door. And while I am fighting with these three strategies, the Lupron is making me lose bone density, making me fat, weak, sore and tired with hot flashes. And I can’t get off of this treatment until my cancer is out of control. While I am being pursued, I have to keep my composure. First, I don’t want to upset my wife and children. For them, my death is unthinkable and would be very difficult for them to cope if they realized what I have. Second, my friends insist that I only consider being cured. They tend to shut the discussion down when I discuss what I think is reality, and they don’t want to go there. To make them feel better, I put on a smile and agree to get well and think positive. The only things that give me any optimism is that some new treatment will be found soon, or I will be one of those lucky exceptions, or God will have mercy and heal me miraculously. So I don’t mean to sound so grim and depressed, but I started this blog to journal my experiences and thoughts as they are…not to sugar coat it. Rest assured that I am ok and dealing with my situation well. I’m not afraid, and am living as though I will live a long time…as may be.
November 19, 2008
With a quiet sigh, I drove back to work. The day seemed a little sunnier than it was an hour before. I was at my urologist getting my next shot of Lupron and my PSA results. The doctor looked at his sheet and told me that the PSA was undetectable. Great news!! He never ceases to entertain me with his advice though. He usually encourages me, and turns around in the same sentence with a big “but” (no pun intended…believe me he doesn’t have one) and pulls the rug out. This time he said the results are fantastic and that we will ride this horse as long as we can…hopefully many years. Then when it fails, “which it will”, we will search for a chemotherapy study to enter. If I can keep the cancer at bay long enough, maybe there will be a study that I can get excited about. Thanks to all my friend who include me in their prayers…it seems to be working. I will visit my oncologist tomorrow to get the results of my X-Ray, CT scans and bone scan. Since my PSA is good, I don’t expect any bad news, but I will update this in a few days.
November 20, 2008
I feel much better today. I had a visit with my oncologist to check my blood and scan results. He said my blood counts were good, chest X-ray was normal, no enlarged lymph nodes or tumors on CT scan, and no bone metastasis on the bone scan. The only thing they found was wear and tear on my joints and an umbilical hernia caused from my surgery. I was wondering why my belly was poking out more after surgery and this is the first time it was noticed on the CT scan. I guess it isn’t worth fixing if it isn’t causing a problem. So I will remain on my current schedule of doctor visits, every three months with the oncologist and every four months with my urologist. After my next set of scans, which will be about May, I will be on a four month schedule with both doctors. It looks like I will be around for a while and this blog may get a little more boring…but that’s a good thing. Between now and then, if something comes up or am inspired by something, I’ll post an update.
February 19, 2009
I went to visit my oncologist this morning, and everything is fine. I didn’t have my PSA checked today, but will do that late next month. The rest of my blood counts are in the normal range. So it looks like I will see my urologist in late March for another shot of Lupron and a PSA check. Then in May I will have a new series of scans done. I feel fine and have been walking a mile and a half almost every day. I still have problems with my feet hurting and general fatigue, but that is par for the course when you don’t have much testosterone. Every once in a while I have a little depression, but again, I think it is a side effect of the Lupron. I’ll give an update next month when I get my PSA results.
March 24, 2009
I went to visit my urologist today for my four month follow up. I had my PSA checked and received another dose of Lupron. The news is still good; my PSA was at 0.04 which is still considered undetectable. He is still preparing me for the time when the androgen deprivation therapy fails, at which time he wants me to enter a chemo study. But for now, it’s business as usual. I will have my bones scanned and a CT scan in May, after which I will see my oncologist. My next PSA check will be at the end of July.
May 23, 2009
As usual, leading up to my semiannual CT and bone scans, I was getting worried. I was having hip pain and was concerned that it was the cancer spreading. However, once again all of the scans showed no sign of metastasis! Each time I get the “all clear” my confidence increases and my attitude gets better. I wish that remission could be achieved without the Lupron…I would have even more optimism.
The theme of this blog is my quest for a cure, but for the last year I have lost a lot of steam in this quest. The excitement of learning about all of the alternative and standard treatments has waned. I’m actually getting bored with it all. There are just too many treatments with great claims for me to focus on or take very seriously. It’s not that I am discounting the validity of any of these treatments, but that I look at them in a different way now. I think it has all to do with “the confidence of the heart”, in other words, we have to pick a treatment that we have confidence in. We have to find something that we firmly believe will cure us, and we have to keep that firm belief and confidence. Our health care providers need to play their part in this as well. Another term for this is the “placebo effect”. I have come to believe that it is one of the most powerful components to kicking cancer or most other diseases. I think it cuts both ways though; you can have confidence that you will be cured, or you can believe you will sicken. My quest now is to find that one thing that will convince me, a doctor who will shatter my doubts and instill a rock solid confidence, someone of something that will give me certain hope that I will be cured and all of this will be behind me. So far, my treatments seem to be working. I am still taking my supplements and maybe this is giving me an edge. My nutritionist is one who has given me the most confidence so far. I’ll now have to fight the thoughts that my first oncologist implanted. She predicted that my androgen deprivation therapy would only be effective for 18 – 24 months. I am on month 23 and will get my PSA checked in July (which is month 25). I know what you’re thinking!!! I will do my best to disregard what she said. The other, and most important, factor to healing is prayer. This is something I will never lose sight of. I pray for my family and friends every day, and appreciate those who pray for me. Please pray for my mother Barbara…she has been in stage 4 colon cancer for almost 3 years now (a miracle in itself) and is in the hospital today. This is the second time in a week my father has had to take her there because she can’t seem to stop throwing up. Doctors said she would only live two or three month, but that was almost three years ago when they made that prediction. We have been very thankful to God for giving us so much more time to enjoy her sweet company and would like to have some more.
I’ll write again in July with my PSA results.
July 28, 2009
I saw my urologist today and my PSA is still undetectable. As usual, he wanted to give me advice for when my PSA starts rising. As far as I am concerned, I’m good to go until December when I get checked again. He suggested I look into calcium supplementation since I have been on Lupron for over two years now. I suppose the big danger right now is bone fractures, so I’m going to get some official advice on what I should do. I may revisit the use of Zometa. He said that there was a calcium supplement specifically for people on androgen deprivation therapy…I’m looking into that as well. I will see my oncologist in August a see what he thinks.
June was a difficult month for me. My mother who has been fighting advanced colon cancer for the last 3 years began losing her battle. I was told she wouldn’t last the week, so I jumped on a plane to California. When I got there, she was too weak to talk or anything else. Her eyes were glazed and her abdomen looked like she was nine months pregnant (tumors in her liver). It was very emotional for me to see her like this and had to prepare myself for her passing. I thought that I would be there to help my sister care for her, attend a funeral and spend a few weeks with my dad to help him adjust. As it turned out, my sister had to have emergency surgery two days after I arrived, so I needed to assume the primary care for my mother and have my brother and father help. As the days went by, my mother gained strength, and within a week was up and around, and eating like I have never seen her eat before.
She was on several medications to keep her comfortable, including morphine, steroids, anti-nausea, anxiety, sleeping pills, diuretics, thyroid, stool softeners, meds to help her have bowel movements and such. I think the steroids are what gave her the appetite. One bad thing about steroids, it made her want to get out of bed several times a night…usually to eat. This made it difficult to get a good night of sleep. Hospice set up a bed for her in the spare bedroom, and I slept on a small bed in the same room so I could keep an eye on her and attend to her needs. After a few weeks of getting up at 1, 2, 3, and 4 a.m., it began to take a toll on me. We weren’t supposed to let her walk around by her self since she was at risk of falling, so when she wanted up, we got up with her. It was kind of strange for her, because every time she woke up, weather from a daytime nap or at night, she felt like it was a new day and was ready to eat breakfast. She always had to ask what time of day it was.
During my stay, the hospice nurse taught me how to organize her medications and keep track of when to give them to her. I fed her, helped her in the bathroom, dressed her, walked her, and cared for my mother in many ways that I never have before. This is the first time that I have been involved with the care of a dying person, and it was an education. In many ways it was very difficult emotionally and physically, and gave me an appreciation for those who have gone though this before. I thank God that I was able to do this and spend some more time with my mother. I was there for one full month, burned most of my vacation time and all of my emergency leave, and had to return home. I had to save just enough vacation time to return for the funeral. I left her in the caring hands of my brother Tom, my sister Carol, brother in-law Pat and my father Jim.
As a cancer patient myself, there was another dimension to this experience. I couldn’t help but wonder if this is a preview of what’s to come for me. I wondered how my family is going to manage when I need help to the bathroom or just to get out of bed. My mother is barely 120 lbs. I am at least 225 lbs and growing! I may not be able to stay at home when that time comes. At least I know a little more on how to prepare.
As of this update, she is still alive…barely. She is too weak to lift her arms, her lips and tongue are inflamed, eats and drinks very little, her voice in almost inaudible, is catheterized, getting bed sores, and has started to refuse morphine. I suppose the end is near. It is so sad for me to see my mother, who is so sweet, suffer so much. It has taken a toll on me emotionally, and am looking into supplements that will help me fight off depression. A friend suggested l-tryptophan and Sam-e. I’ve started taking these, but I am going to run it by my nutritional advisor to make sure it’s ok for me.
The time I had with my mom was precious; I wouldn’t trade it for anything. Saying goodbye to her on my last day there was the hardest thing for me. It gave me a new sensitivity to my kids. But believe me, being a cancer patient caring for someone dying of cancer is hard!
(by the way, today is my 25th wedding anniversary! and my wife is in Europe...lucky her!)
September 25, 2009
Ok, I’m getting back to normal. I’ve been recovering from the grief of losing my mother. She passed from this world on August 13th losing her battle with colon cancer. Thank you all for the prayers and support during this ordeal. In my last update, I mentioned that I was going to look into calcium supplements to counter bone loss from being on Lupron for so long. Also, I wanted to try Sam-e and L tryptophan to lift my mood. I consulted my nutritionist about using these, and was told that he didn’t want be using calcium. I contacted him via email, so he didn’t elaborate on why, but I read some studies that found calcium supplementation can actually increase the risk of prostate cancer. Here is a link to one such article: http://www.cancer.org/docroot/NWS/content/NWS_1_1x_High_Calcium_Intake_Linked_to_Prostate_Cancer.asp
Instead, he recommended that I take 3-6 mg. of Boron per day and 10 drops of Jarrosil from Jarrow in a small amount of water per day. It’s interesting that my Urologist suggested taking calcium when there is so much information out there warning men with prostate cancer about calcium supplementation. So for now, this is what I will do to keep my bones strong. I still have the option to get infusions of Zometa, but I made the choice a few years ago to not continue with it. I received too much conflicting advice from doctors about it.
As far as the Sam-e and l-tryptophan, I’ve been taking it for two months now and haven’t noticed any difference. I think that I’ve been dealing with stress and grief and not depression. So, I will probably discontinue this when I run out of pills. My next set of scans will be in November and my PSA will be checked in early December.
November 19, 2009
Things were a little crazy this month. I called my oncologist’s office to see if my scan orders were sent to the clinic that performs my CT and bone scans, and was told that my doctor had retired, that the office was closed and that I will be seeing another doctor at a different location. They hadn’t sent the orders for my scans. It took three weeks for someone to help me get set up for scans. The doctor’s office would say that the orders were sent, and the place that does the scans would say that they weren’t received. This went back and forth for three weeks until someone in scheduling decided to get a verbal order from the doctor. The lesson here…be proactive and don’t wait for someone to call.
I finally got my scans and met with my new oncologist last week to go over the results. While there, he wanted to check my PSA and bone density. The good new… my CT scan, bone scan and PSA are all good! The bad news is that the bone density scan found osteoporosis. They emailed my results this morning and I have been trying to figure out what the T and Z scores mean. Here are some of the images sent:
From what I have been able to learn from the web, all of these scores put me into the osteoporosis range with a high risk of fracture. This has me a little scared, because it seems everything that I have tried so far isn’t enough to keep my bones dense, and the alternative is to resume the Zometa infusions…something I have been trying to avoid because of all the conflicting information I received from doctors a few years ago. I really don’t want a spinal or hip fracture, because quality of life will only go down hill from there. So I will change my decision and start the Zometa.One last thing I want to mention; my brother’s PSA has been rising. Since my diagnosis, he has been getting his PSA checked about every six months. He is the same age I was when I started getting checked, and his PSA has been following exactly like mine. He is now 45 years old and has a PSA of 4.2. His doctor recommended he see a Urologist, whom he saw yesterday. The Urologist recommended that he get a biopsy done because of family history of the disease. If it is ok with him, I will give an update when the results are in. This has me worried not only for him, but for my son as well. It looks like there may be a definite genetic link here.
January 14, 2010
Thank God! My brother's biopsy results are negative...what a relief!
Since my last update, I have been taking the generic version of Fosamax. Since I had such a bad reaction to Zometa, my doctor said to try Fosamax instead. It is a once a week pill instead of an infusion every three months. So far I haven't had any side effects. I'll update at the end of next month after I visit my oncologist.
March 4, 2010
This is about my 3rd anniversary since being diagnosed, and so far, my treatments have been effective. My oncologist did a PSA Ultra test this time, which is a more sensitive PSA test. He said that it would help him find the “needle in the hay stack”. The results came back a few days ago with an undetectable PSA or < .01. Every time I see numbers like this, I get more optimistic that I will be around longer than my medical team has expected. One thing that may be making the difference is that I have faithfully been taking the supplements that I listed earlier in this blog. Maybe taking Ave’ or Artemisinin early in my treatment gave me an edge, or possibly vitamin D, or the other supplements that are trying to act as aromatase inhibitors etc. If my numbers are still this low two years from now, I hope to find an oncologist that is willing to try pulsing my Lupron dose and also try an aromatase inhibitor. If I’m going to be around years from now, I need to find a way off of the Lupron. My bones and body are getting too weak and sore. So for now, I’m in the hunt for a doctor that has a strong background in prostate cancer, and is current on the most progressive treatments. I’ll post again in May after my next set of scans.
July 2, 2010
I said that I would post again in May, but I wanted to wait until all of my test results were in. My doctor wanted me to get a colonoscopy done because of my age, family history and risk factors. Once again, nothing showed up on the CT and bone scans. Also, my PSA was undetectable and the colonoscopy found only a benign polyp. The only changes so far is an increase in side effects from the leuprolide treatment. I was on a four month dose of Lupron, but my Urologist decided to start me on a six month dosage of Eligard. It cuts down on how many times I see him, but the new drug has made me feel worse. My feet are aching much more than they were, I'm fighting depression more, and I find that things keep going around and around in my mind...much like an ear worm when you hear song you can't get out of your head. My testosterone must be at a new low. Not sure what I will be able to do about this, but I will be seeing a different Oncologist next month. Maybe he will have something for me to try. My next post should be in August.
August 8, 2010
Last week I went to see a different oncologist, one my friend Susan recommended. She was so happy with him that I had to give him a try. I have had a few doctors that seem rushed and aren't apt to slow down so I can ask all of the questions I have. Even when I ask questions, usually they can't answer it and don't offer any guidance. One example is when I mentioned how much pain I was having in my feet, my former oncologist just shrugged his shoulders and nodded his head, and didn't offer me any advice. My new oncologist examined my left foot (the one in the most pain) then ordered an MRI, which was done that same day, and recommended an orthopedic surgeon. He personally called me the next day with the MRI results. It turns out that I've been limping around on a fractured heel all this time. Now I'm on crutches and have a boot on my leg, but at least I know what the pain is about. Now I hope my other foot can hold up to the extra weight that I have to put on it. If that one fractures, I'm going to have bigger problems. The fracture is due to osteoporosis.
After getting my boot and crutches, I returned to work and found out how difficult it was going to be to do my job. I told the orthopedic surgeon that I sit most of the time and should be able to do my job just fine. I didn't realize how much I get up and down all day! So to minimize my time at work, I decided to take a couple of weeks vacation and visit my dad in California. He just sits around most of the time, so I will probably stay off my feet better at his house than at work and home here. Now I have to find out what is involved in getting through security at the airport with crutches and a boot.
I'm very happy with my new doctor; he answered many of my questions, he respects the work of the nutritional oncologist that I've consulted with, he even recommended some supplements to help my mood and sleep...something all of the other doctors wouldn't have done. His office is well organized and had all of my tests and scans set up before I left. I finally feel comfortable and confident with my oncologist. I have my next set of scans in November and will post again then.
November 22, 2010
Last week I got my scan and PSA results, and everything is clear! The osteoporosis is still taking a toll though. I spent a month wearing a boot on my left foot and walking with crutches, but with no results. Now both of my feet are in pain and my middle and upper back have started hurting. The doctor is hoping that the Alendronate (Fosomax) will stabilize my bones, but so far it isn't doing enough. What I have decided to do with my feet, is to try and find some comfortable shoes with good insoles to limit the pain enough to allow some walking time. Its another one of those catch 22 situations; I need to walk to keep my bones strong, but my feet hurt so much, I can't take walks. I need my testosterone to help rebuild my bones, but it will feed the cancer and has to be blocked. There are no further steps to take in my treatment until the cancer spreads. I sure hope treatments will be developed that won't have equal and opposite side effects. Wouldn't it be nice to have treatments that make you healthier and feel better...without a down side? My next PSA test will be in March, and scans in June or July.
April 9, 2011
I visited my oncologist a few weeks ago and got my labs done and discussed some of my quality of life issues. One of the things I needed discussed was work restrictions. Late last year I was informed that I would be having extra duties added to my current ones starting in 2011. As I began taking on these duties, it became clear that I was going to be expected to do quite a bit of foot work...standing and walking. So in a meeting with management and those formulating the new job description, I protested against the duties that required me to be on my feet for significant amounts of time. I told them about my pain issues, most of whom present were already aware of. I was pretty aggravated that they would include these duties, knowing my situation. Later I was informed that if I couldn't preform certain duties, that I would need written documentation from my doctor. Up until now, I didn't have any concerns about being able to preform my job, and didn't need to put in place work restrictions. The new duties delegated to me change all that. I really didn't want to discuss my health in that setting, but I felt cornered. When I spoke up, everyone including myself had to cover our butts. As a result, I now have work restrictions in place, and the job description was modified to not include the duties that require walking and standing. So all is well now.
To help me deal with the pain in my feet, hips and back, I was prescribed pain medication, which has been helping some. I was also prescribed a handicap placard to help me cut down on walking distances. For my hernia that was caused by the prostate surgery, my doctor suggested talking to a general surgeon. I have an appointment with one next week to find out what can be done, and if insurance will cover it.
My labs were still good and my psa is undetectable! I'm due for my next shot of Eligard on April 12th . I've been getting my injections at the office of my Urologist, who did my surgery, however, he sent out a message recently informing his patients that he was leaving his practice to take a chief administrative position. So I will be getting everything done at the oncology clinic from now on. My oncologist said that if I develop urological issues, he would be able to set me up with a new doctor. Since my psa has been holding so well and that oncology will be handling my injections, we decided to synchronize my scans and injections. He felt it best to stretch out the next round of CT and bone scans until next October, when my next injection is due. This will reduce my exposure to radiation and reduce the number of doctor visits. He also suggested that I visit my orthopedic surgeon to further discuss the stress fractures in my heels and to get another bone density evaluation done.
July 10, 2011
I had surgery in April to fix the incisional hernia caused by my prostate surgery in 2007. It was done in an outpatient facility, and only took an hour or so. It caused a lot of pain, but it was worth getting done. I wish that I would have done this three years ago. It makes me feel much better, and I have one less thing dragging me down.
For my feet, I discovered Sketcher Shape Up shoes! They have a rocker bottom sole which takes the pressure and impact off of my heels. It hasn't helped heal the fractures, but I can walk better and stay on my feet much longer than before. I would recommend them to anyone with the same problem. As far as toning up my legs and butt, they are worthless...lol.
All in all things have been going well this summer. No new problems, and have found solutions to existing ones. I feel fortunate that four years have passed since my treatments began, and I'm still kicking. I'll post again in October after I get results from my next PSA and scans.
October 11, 2011
My PSA, bone and CT scans are all clear! My doctor has decided to hold off on scheduling future scans until symptoms appear. So unless problems develop, I won't be visiting the doctor until next April for my next Eligard shot and PSA test.
October 17, 2011
Today a man named David Hass shared an article that he wrote concerning the importance of seeking others dealing with cancer for support. I haven't joined a formal support group myself, however communicating online with others has been very important to me from the start. Thank you David for sharing this. Please read:
July 10, 2011
I had surgery in April to fix the incisional hernia caused by my prostate surgery in 2007. It was done in an outpatient facility, and only took an hour or so. It caused a lot of pain, but it was worth getting done. I wish that I would have done this three years ago. It makes me feel much better, and I have one less thing dragging me down.
For my feet, I discovered Sketcher Shape Up shoes! They have a rocker bottom sole which takes the pressure and impact off of my heels. It hasn't helped heal the fractures, but I can walk better and stay on my feet much longer than before. I would recommend them to anyone with the same problem. As far as toning up my legs and butt, they are worthless...lol.
All in all things have been going well this summer. No new problems, and have found solutions to existing ones. I feel fortunate that four years have passed since my treatments began, and I'm still kicking. I'll post again in October after I get results from my next PSA and scans.
October 11, 2011
My PSA, bone and CT scans are all clear! My doctor has decided to hold off on scheduling future scans until symptoms appear. So unless problems develop, I won't be visiting the doctor until next April for my next Eligard shot and PSA test.
October 17, 2011
Today a man named David Hass shared an article that he wrote concerning the importance of seeking others dealing with cancer for support. I haven't joined a formal support group myself, however communicating online with others has been very important to me from the start. Thank you David for sharing this. Please read:
Support Groups Take Away the Loneliness
When you are facing difficult times, it helps to talk with people who understand what you are going through. Cancer, in particular, is a lonely road to travel that not everyone can relate to. Whether you are recently diagnosed or a survivor who has marked the 5-year milestone, support groups can help you travel this path and take away the feelings of isolation.
Tell someone you have cancer and they are sympathetic. They will tell you they’re sorry, they’ll say they’re praying for you. But they really don’t want to hear about how your bowel movements have been affected and how every stray hair now leaves you’re worried about the ones that remain.
Talk to another cancer patient, however, and you have someone who can relate and truly understand. They’ll share their experiences, assure you that what you’re going through is normal and help you find effective coping strategies. More than sympathy and prayers, you’ll get information that you can really use, and a friend who might even help you find some laughter in this difficult time.
The support groups can meet in person or they can be online. The method will depend on what works for you. Whether you are diagnosed with a common cancer such as breast cancer and chat online or going through a rare cancer like mesothelioma and meet in person, the therapeutic effect is the same: You won’t feel as alone anymore.
Support groups can also provide each other with valuable resources, referrals for doctors or tips on how to handle the debilitating exhaustion that sets in after treatments. Because these other people know exactly what you’re going through, they have a good idea of what you are looking for and can help you find it. They know which doctors have the best bedside manner and will share that information with you. They also know which clinics are using the most ground-breaking procedures for treatments and will guide you to that information, as well.
There is hope for anyone struggling with cancer. You don’t have to travel this road alone and you don’t have to isolate yourself to get away from the sympathetic glances that start to hurt as much as the diagnosis. As a survivor who lives in constant fear of a relapse, you can find comfort and relief in support groups. People in all stages of the process can find healing and help by sharing their stories and offering help to others. Find a support group today and get involved so you can say good-bye to the suffocating isolation.
Tell someone you have cancer and they are sympathetic. They will tell you they’re sorry, they’ll say they’re praying for you. But they really don’t want to hear about how your bowel movements have been affected and how every stray hair now leaves you’re worried about the ones that remain.
Talk to another cancer patient, however, and you have someone who can relate and truly understand. They’ll share their experiences, assure you that what you’re going through is normal and help you find effective coping strategies. More than sympathy and prayers, you’ll get information that you can really use, and a friend who might even help you find some laughter in this difficult time.
The support groups can meet in person or they can be online. The method will depend on what works for you. Whether you are diagnosed with a common cancer such as breast cancer and chat online or going through a rare cancer like mesothelioma and meet in person, the therapeutic effect is the same: You won’t feel as alone anymore.
Support groups can also provide each other with valuable resources, referrals for doctors or tips on how to handle the debilitating exhaustion that sets in after treatments. Because these other people know exactly what you’re going through, they have a good idea of what you are looking for and can help you find it. They know which doctors have the best bedside manner and will share that information with you. They also know which clinics are using the most ground-breaking procedures for treatments and will guide you to that information, as well.
There is hope for anyone struggling with cancer. You don’t have to travel this road alone and you don’t have to isolate yourself to get away from the sympathetic glances that start to hurt as much as the diagnosis. As a survivor who lives in constant fear of a relapse, you can find comfort and relief in support groups. People in all stages of the process can find healing and help by sharing their stories and offering help to others. Find a support group today and get involved so you can say good-bye to the suffocating isolation.
By: David Haas
December 30, 2011
I thought that it would be months until being scanned again. Unfortunately, I started having some intense pain in my neck and left shoulder about a week ago. Thinking that it was just a strained muscle, I figured it would pass after a day or two. After four days of little sleep and constant pain, I decided to call my oncologist for a prescription stronger than the Tramadol that I have been taking. He prescribed hydrocodone and an MRI. The pain pills seem to take care of about 90 percent of the pain, but has been making me on the verge of nausea after eating. Hopefully nothing is found on the MRI, but the pain is getting worse, so I'm a little worried. I'll post again after results are in.
Update: I just got results, and the pain is not caused by cancer! It looks like I have some disc protrusion pushing on a nerve in my neck. I will get a steroid prescription to take for three days, and then find a doctor next week to deal with this.
April 24, 2012
After eight visits to a Chiropractor, I was able to resolve my neck pain. He didn't feel comfortable to make any adjustments, but gave me some good excersizes.Since my last post, I started seeing a general practitioner to help me with the chronic pain related to my hormone treatments, and other issues. She ordered a bone density scan, since it has been more than two years since my last one. The Alendronate doesn't seem to be doing it's job...I still have osteoporosis with a high fracture risk level. She is recommending that I start using Forteo. This drug requires an injection once a day...not looking forward to that. But if it will prevent my back or hip from breaking, I guess it is worth trying. And yes, I have read all the scary stuff on the web about this stuff, but what else am I going to do. She also got me started on Cymbalta for the chronic pain and some depression that I've been experiencing since December. I also, saw my oncologist recently, and all my blood counts are good, and my PSA is still good. All in all, I feel good now. This month marks five years since my surgery, and in June will mark five years since the hormone treatment started. According to my doctors, I have done much better than expected.
July 5, 2012
Well, a new twist in the continuing saga of my cancer watch and treatment. Last Thursday, I decided to visit a dermatologist near my workplace to have a mole on my arm checked. I have been watching it for the past three years. It started as a small dark spot, and over time grew to about a quarter inch in diameter and has remained that size for over a year. I have had plenty of moles on my body and have had them check and biopsied, always benign. I even took advantage of a free skin cancer screening at work, and was told to just watch to see if the mole on my arm is growing. Well, it didn’t grow since then, which was over a year ago. After the weather started warming up here in Austin, I started wearing short sleeves. One of my co-workers asked if “that thing on my arm is growing”, and I guess that made me a little self conscience, so I decided to make the doctor appointment to have it checked. They called me on Monday and said it was a melanoma! So I am scheduled to go in on Monday to have more of my arm removed. I hope that’s all that is needed.
For the past three weeks, my lower back and hips have been very stiff and sore, so I called my oncologist to find out if I should make an appointment or just go to a Chiropractor as I did earlier this year for my upper back. They wanted me to make an appointment with them first. So they decided to order an MRI of my pelvic area to find out if there are any fractures or cancer. I will have that done tonight. By the way, my prescription plan denied my doctor's request to put me on Forteo. They said that a drug that can only be used for a maximum of 24 months is "unapprovable". And the odd thing is, my doctor received a letter from CVS saying that it was denied because I didn't appeal their decision. I didn't know that I could appeal! So I'm still on the alendronate.
September 26, 2012
Back in July, my dermatologist took a pretty big bite out of my arm. I was expecting something a little larger and deeper than the spot that was remove before. To my surprise, she marked out an oval shaped area that was about three and a half inches long by 2 inches wide. Then she numbed up the area to be cut, and proceeded to cut all the way down to the muscle. Now I have a cool looking scar on my arm. I can tell all kinds of stories about how I got it. Fortunately, the biopsy report from this came back negative, so I just go in for three month follow up appointments now. It’s strange how we learn our lessons when it is too late. I spent most of my youth and adult life worrying very little about melanoma. Or at least I was in denial that I would really get it. I knew that it was possible. Now after seeing how much skin is removed just for biopsies, I hope that nothing crops up on my face! Maybe a bunch of us with melanoma and resulting scars should stand in front of tanning places to show others what they are risking.
My back and hips are still hurting, but no fractures or cancer showed up on the MRI. So I plan to go to some more doctors to try to nail down what is really going on. I suspect that my muscles in the lower back are weak and maybe some sciatic nerve problems may be the source. The other possible source may be the alendronate. My oncologist mentioned that some people develop chronic joint and bone pain from it. What are my alternatives? CVS denied my request for Forteo, Zometa makes me sick, and if I stop taking alendronate, who knows. So until I get this resolved, I have been taking either ibuprofen or hydrocodone to get relief. Neither one seems to stop the pain, but at least the hydrocodone makes me feel better for a few hours a day. I just have to guard against getting addicted.
October 29, 2012
I had my oncology appointment yesterday, and my PSA is still undetectable! Unfortunately, I am still having a lot of pain, cramps and muscle spasms. So I discussed this with the doctor, and we decided to skip the Eligard shot this month and let my testosterone come back up. Also, he recommended that I stop the Alendronate. I've been wanting to try this for a long time, and finally he agreed and I will get a vacation from treatment after five and a half years! It's a little scary, but we will monitor my PSA every month for the next five months, with the shot on standby. I hope the PSA stays down so I can have enough energy to start exercising and re tone my body some before having to start treatment again. Chronic pain sucks and I am learning first hand how it affects quality of life. That is why I am willing to take the risk of letting my testosterone rise. Life is tough when you don't feel good, and don't see any improvement coming.
December 28, 2012
Just after Thanksgiving, my PSA was undetectable! I didn't notice a big difference in how I was feeling, but being off of the Eligard was a big psychological boost. Since then my feet have stopped hurting, my fatigue has gone away, and hair has started to grow back on my arms...so the testosterone is waking up. I have tried to exercise some over the past few weeks. It's incredible how weak my muscles have become over the past five years. However, they seem to recover much better after a workout vs. while on treatment. I'm still having some lower back pain on my left side that doesn't want to resolve, but I'm hoping that the exercise will help.
Today I received my December PSA results, and it is still undetectable! So over the next month I will contiue to try and wake up my muscles and regain some lost ground. Hopefully I can strengthen my bones in the process.
May 11, 2013
For every month since my last post, my PSA has bee undetectable. So thank God, I haven't had to be injected with Eligard for over a year. One reason that it has remained low, is my testosterone remains very low. Last check it was 85, which is extremely low, but 15 points higher than on Eligard. The hair is back on my arms, and some is starting to spring back up on my legs, so just that little increase in testosterone makes a difference. I will continue to get my PSA checked every month. I suppose when my hormones get closer to normal, things will change, But for now, I feel much better than before.
July, 22 2013
My PSA is still undetectable, and my testosterone is 417! The T level is concidered normal, but for a man my age, it should be closer to the 600s. Now it gets interesting and a little scary, since the hormone is comming back. Lets see how long I can ride this horse!
November, 11 2013
Well, I am still riding the horse. My testosterone is at 478 and my PSA is still undetectable.
September 11, 2014
Since my last post, my PSA is still undetectable and my testosterone at last check was 775! So this is very interesting...I've been off treatment for about two years, my testosterone is pretty high, and the cancer is still not showing up. I'm feeling very normal, and starting to think I have a lot of miles left. Must be doing something right!
May 21, 2015
Nothing has changed. I am still off of my treatments with undetectable PSA. My last testosterone check was at 675.
November, 24 2015
PSA is still undetectable, no hormone treatment, and testosterone is still in the high 600s. I'm starting to find more articles online that show some doctors are investigating testosterone supplementation for men who have been diagnosed with prostate cancer. I haven't had any testosterone supplementation, but have been keeping with my supplement plan described earlier in this blog. The idea was to keep the estrogen low and testosterone higher...which I think has been achieved (in a more natural way). I wish there would be some studies that investigate the relationship of hormone balance...and I will say it again balance with prostate cancer. If the balance is restored to normal levels, does the cancer recede? I think this is the correct question, and the path to investigate. Supplementing one thing or blocking another may not address the underlying problem.
April, 13, 2016
All of my labs are in the normal range, and my PSA is still less than 0.02. My Oncologist and I have decided that I can reduce my visits to twice a year. So my next set of labs and doctor visit will be next October. He recommended that I read a book called "How Not To Die" by Michael Greger MD. I'll give it a read.
October 13,2016
My PSA is less than .01. Red blood cell count was a little low, but not low enough to concern the doctor. All other labs were normal. The doctor said to keep doing what I'm doing...we both expected the cancer to return long ago. I'm am still off of all treatments and pharmaceuticals. So all is still well!
August 30,2018
Still here and everything is the same as the last post!
I thought that it would be months until being scanned again. Unfortunately, I started having some intense pain in my neck and left shoulder about a week ago. Thinking that it was just a strained muscle, I figured it would pass after a day or two. After four days of little sleep and constant pain, I decided to call my oncologist for a prescription stronger than the Tramadol that I have been taking. He prescribed hydrocodone and an MRI. The pain pills seem to take care of about 90 percent of the pain, but has been making me on the verge of nausea after eating. Hopefully nothing is found on the MRI, but the pain is getting worse, so I'm a little worried. I'll post again after results are in.
Update: I just got results, and the pain is not caused by cancer! It looks like I have some disc protrusion pushing on a nerve in my neck. I will get a steroid prescription to take for three days, and then find a doctor next week to deal with this.
April 24, 2012
After eight visits to a Chiropractor, I was able to resolve my neck pain. He didn't feel comfortable to make any adjustments, but gave me some good excersizes.Since my last post, I started seeing a general practitioner to help me with the chronic pain related to my hormone treatments, and other issues. She ordered a bone density scan, since it has been more than two years since my last one. The Alendronate doesn't seem to be doing it's job...I still have osteoporosis with a high fracture risk level. She is recommending that I start using Forteo. This drug requires an injection once a day...not looking forward to that. But if it will prevent my back or hip from breaking, I guess it is worth trying. And yes, I have read all the scary stuff on the web about this stuff, but what else am I going to do. She also got me started on Cymbalta for the chronic pain and some depression that I've been experiencing since December. I also, saw my oncologist recently, and all my blood counts are good, and my PSA is still good. All in all, I feel good now. This month marks five years since my surgery, and in June will mark five years since the hormone treatment started. According to my doctors, I have done much better than expected.
July 5, 2012
Well, a new twist in the continuing saga of my cancer watch and treatment. Last Thursday, I decided to visit a dermatologist near my workplace to have a mole on my arm checked. I have been watching it for the past three years. It started as a small dark spot, and over time grew to about a quarter inch in diameter and has remained that size for over a year. I have had plenty of moles on my body and have had them check and biopsied, always benign. I even took advantage of a free skin cancer screening at work, and was told to just watch to see if the mole on my arm is growing. Well, it didn’t grow since then, which was over a year ago. After the weather started warming up here in Austin, I started wearing short sleeves. One of my co-workers asked if “that thing on my arm is growing”, and I guess that made me a little self conscience, so I decided to make the doctor appointment to have it checked. They called me on Monday and said it was a melanoma! So I am scheduled to go in on Monday to have more of my arm removed. I hope that’s all that is needed.
For the past three weeks, my lower back and hips have been very stiff and sore, so I called my oncologist to find out if I should make an appointment or just go to a Chiropractor as I did earlier this year for my upper back. They wanted me to make an appointment with them first. So they decided to order an MRI of my pelvic area to find out if there are any fractures or cancer. I will have that done tonight. By the way, my prescription plan denied my doctor's request to put me on Forteo. They said that a drug that can only be used for a maximum of 24 months is "unapprovable". And the odd thing is, my doctor received a letter from CVS saying that it was denied because I didn't appeal their decision. I didn't know that I could appeal! So I'm still on the alendronate.
September 26, 2012
Back in July, my dermatologist took a pretty big bite out of my arm. I was expecting something a little larger and deeper than the spot that was remove before. To my surprise, she marked out an oval shaped area that was about three and a half inches long by 2 inches wide. Then she numbed up the area to be cut, and proceeded to cut all the way down to the muscle. Now I have a cool looking scar on my arm. I can tell all kinds of stories about how I got it. Fortunately, the biopsy report from this came back negative, so I just go in for three month follow up appointments now. It’s strange how we learn our lessons when it is too late. I spent most of my youth and adult life worrying very little about melanoma. Or at least I was in denial that I would really get it. I knew that it was possible. Now after seeing how much skin is removed just for biopsies, I hope that nothing crops up on my face! Maybe a bunch of us with melanoma and resulting scars should stand in front of tanning places to show others what they are risking.
My back and hips are still hurting, but no fractures or cancer showed up on the MRI. So I plan to go to some more doctors to try to nail down what is really going on. I suspect that my muscles in the lower back are weak and maybe some sciatic nerve problems may be the source. The other possible source may be the alendronate. My oncologist mentioned that some people develop chronic joint and bone pain from it. What are my alternatives? CVS denied my request for Forteo, Zometa makes me sick, and if I stop taking alendronate, who knows. So until I get this resolved, I have been taking either ibuprofen or hydrocodone to get relief. Neither one seems to stop the pain, but at least the hydrocodone makes me feel better for a few hours a day. I just have to guard against getting addicted.
October 29, 2012
I had my oncology appointment yesterday, and my PSA is still undetectable! Unfortunately, I am still having a lot of pain, cramps and muscle spasms. So I discussed this with the doctor, and we decided to skip the Eligard shot this month and let my testosterone come back up. Also, he recommended that I stop the Alendronate. I've been wanting to try this for a long time, and finally he agreed and I will get a vacation from treatment after five and a half years! It's a little scary, but we will monitor my PSA every month for the next five months, with the shot on standby. I hope the PSA stays down so I can have enough energy to start exercising and re tone my body some before having to start treatment again. Chronic pain sucks and I am learning first hand how it affects quality of life. That is why I am willing to take the risk of letting my testosterone rise. Life is tough when you don't feel good, and don't see any improvement coming.
December 28, 2012
Just after Thanksgiving, my PSA was undetectable! I didn't notice a big difference in how I was feeling, but being off of the Eligard was a big psychological boost. Since then my feet have stopped hurting, my fatigue has gone away, and hair has started to grow back on my arms...so the testosterone is waking up. I have tried to exercise some over the past few weeks. It's incredible how weak my muscles have become over the past five years. However, they seem to recover much better after a workout vs. while on treatment. I'm still having some lower back pain on my left side that doesn't want to resolve, but I'm hoping that the exercise will help.
Today I received my December PSA results, and it is still undetectable! So over the next month I will contiue to try and wake up my muscles and regain some lost ground. Hopefully I can strengthen my bones in the process.
May 11, 2013
For every month since my last post, my PSA has bee undetectable. So thank God, I haven't had to be injected with Eligard for over a year. One reason that it has remained low, is my testosterone remains very low. Last check it was 85, which is extremely low, but 15 points higher than on Eligard. The hair is back on my arms, and some is starting to spring back up on my legs, so just that little increase in testosterone makes a difference. I will continue to get my PSA checked every month. I suppose when my hormones get closer to normal, things will change, But for now, I feel much better than before.
July, 22 2013
My PSA is still undetectable, and my testosterone is 417! The T level is concidered normal, but for a man my age, it should be closer to the 600s. Now it gets interesting and a little scary, since the hormone is comming back. Lets see how long I can ride this horse!
November, 11 2013
Well, I am still riding the horse. My testosterone is at 478 and my PSA is still undetectable.
September 11, 2014
Since my last post, my PSA is still undetectable and my testosterone at last check was 775! So this is very interesting...I've been off treatment for about two years, my testosterone is pretty high, and the cancer is still not showing up. I'm feeling very normal, and starting to think I have a lot of miles left. Must be doing something right!
May 21, 2015
Nothing has changed. I am still off of my treatments with undetectable PSA. My last testosterone check was at 675.
November, 24 2015
PSA is still undetectable, no hormone treatment, and testosterone is still in the high 600s. I'm starting to find more articles online that show some doctors are investigating testosterone supplementation for men who have been diagnosed with prostate cancer. I haven't had any testosterone supplementation, but have been keeping with my supplement plan described earlier in this blog. The idea was to keep the estrogen low and testosterone higher...which I think has been achieved (in a more natural way). I wish there would be some studies that investigate the relationship of hormone balance...and I will say it again balance with prostate cancer. If the balance is restored to normal levels, does the cancer recede? I think this is the correct question, and the path to investigate. Supplementing one thing or blocking another may not address the underlying problem.
April, 13, 2016
All of my labs are in the normal range, and my PSA is still less than 0.02. My Oncologist and I have decided that I can reduce my visits to twice a year. So my next set of labs and doctor visit will be next October. He recommended that I read a book called "How Not To Die" by Michael Greger MD. I'll give it a read.
October 13,2016
My PSA is less than .01. Red blood cell count was a little low, but not low enough to concern the doctor. All other labs were normal. The doctor said to keep doing what I'm doing...we both expected the cancer to return long ago. I'm am still off of all treatments and pharmaceuticals. So all is still well!
August 30,2018
Still here and everything is the same as the last post!
April 28, 2024
still here and no sign of cancer!
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