I had had a PSA just a few years ago of about 10 and rising. My doctor at the time suggested Lupron, which I declined. He suggested I see a urologist, which I decided not to do, primarily because I didn't feel any symptoms. I went to an internist and I began intravenous Vitamin C. I previously had taken Vitamin C drips, followed by chelation therapy, so at that point my veins shut down and I could no longer take the drips.
My internist recommended a PSA test, which showed 800. I went to a urologist who had me on Degarelix, which I followed for 16 monthly shots. This brought my PSA down to 0.5 and my testosterone to 5. I was still working with my internist, who is an integrative medicine doctor and we toyed around with the idea of my taking testosterone. My urologist assured me that my testosterone would go up and now, about 4 months after my Degarelix shots it has gone up to 26.
I have plenty of energy. However, I'd like to take something to give my testosterone a little boost. I haven't mentioned it yet to my doctors, but I'm thinking of DHEA, which converts to testosterone and estrogen.
I didn't have a libido before my treatments and I certainly don't have one now. I still have hot flashes about 3 or 4 times a day. I get up about 3-4 times a night. Fortunately, I can nap in the daytime. I exercise half an hour twice a day. However, because my back problems have worsened over the years I can't jog the way I did when I ran marathons until age 70. I am a welcome customer at the Vitamin Shoppe.
It has been 6 months since I completed treatment with Degarelix (Firmagon), which brought my PSA down from 800 (800) to five (5). My PSA now is essentially the same at 4.6. My doctor wants to see me in 4 months.
My testosterone after completing my treatments was at 26, which, according to Dr. Snuffy Meyers, is a castrate level. It is now 79. I am pleased with that increase, and look forward to a further increase as long as the PSA is steady so I no longer have any hot flashes, which at this point are minimal.
My primary doctor, an internist, thought I might give testosterone a boost with patches or gel. I might do that, but in the meantime I'm taking DHEA and and Boron to give the testosterone a gentle push.
About a year ago my vitamin D level was 30. I took 5000 units a day, which pushed it up to 70. Oddly, my next test dropped down to 50. After my doctor prescribed 10,000 units twice a week it is now back up to 68, so I can go back to 5000 units a day.
Later: Just a quick correction. I took eight tablets of 50,000 IU's each over a month's time. I now continue to take 5,000 daily. Of course I will monitor my blood level of the D to make sure it doesn't go over 100 ng/ml.
I have been through a full cycle with Firmagon (Degarelix). Then I had a vacation from it, in which time my PSA climbed to about 32. I have resumed Firmagon and after an initial double shot and a single shot my PSA is at .56, with a Testosterone of zero, which is surprising since I recently had a T of about 30. I'm amazed how much energy I have (for an 80-year old) with a T of zero. I exercise daily by walking an hour a day. I have low back pain, so I often do an exercise routine which is a mixture of aerobics and strength work on my back. Until I was 75 I used to jog an hour a day, and do an occasional marathon, but angina has kicked in. A triple bypass has not eliminated the angina. My resistance training has been hampered lately with a development of arthritis in the neck. I don't completely avoid sugar, but my sugar levels are OK, as well as blood pressure. My urologist asked me to see a radiologist, but for now I've ruled that out. I told my internist (integrative) what my urologist had said, and without hesitation he said you don't want that.
I'm in my second cycle of Degarelix. The first day after the injection I feel pain. The hot flashes are minimal. My testosterone level is zero, yet, at age 80, I feel well and can exercise and perform household and strenuous yardwork chores very easily, except that I'm limited by back pain when I exert with poor posture and angina.
It's been a few months since my last PSA test which was .5. I saw the doctor and had an ultrasound scan of my kidneys, bladder and prostate. Based on that the doctor said I could come back in three months, without any injections. However, blood was drawn for a PSA test. I called ten days later for the results and it was 14.2. I could call to see what the doctor thinks about the result, but I've decided to wait for my next scheduled visit 2 1/2 months from now. Even though I'm doing my exercises, I have minimal discomfort in my neck and shoulder. I've been getting up 2-3 times a night, providing I do not drink anything about 3 1/2 hours before sleeping. I'm not getting a full eight hours of sleep, so I take a nap during the day. My primary doctor is OK with my taking 10,000 mg. of Vit D3 since he wants to see it go up. I'll be gardening so the sun should kick up the D3 a bit. My blood pressure is 120/70. I have not been able to lose any weight despite daily exercise, probably because I eat too much. I won't go into the list of supplements I take, just that I have a glass of wine each day, which provides a tiny amount of resveratrol. I also take liposomal Vit. C, which I make myself. I've been taking it for years now, but I can't be sure it is effective.
My latest PSA is 47, which I reached within weeks of a low of .5. In spite of that rise, I am currently on vacation from my Degarelix shots. As a result, I experience very few hot flashes. Having read that this sort of treatment can lead, among other problems, to diabetes and that some men are using Metformin to prevent it, I asked my primary doctor if he would prescribe it for me. He was hesitant to do so, but had me take a blood test to check my sugar levels. The top of the range is 8 and mine turned out to be 8.1, so he agreed to my taking the Metformin. My blood pressure has been very good, no higher than 120 over 80. I'm still way overweight. I had developed what seems like arthritis in my neck/shoulder, which hampered my activity level, but that has improved lately. Despite a triple bypass done 3-1/2 years ago, I still deal with angina which manifests itself only when I overexert myself. As to taking supplements, I among those who have very expensive urine.
I just want to add that I take 10,000 units of vit. D3, and I'm up to 63, where the high point is 100
My PSA is now 7 after a low point of .5 I just had a double shot and I won't have to get another shot to see how fast the PSA goes up without a monthly shot. I'm happy to say the double shot was without pain the days after. However, I still get hot flashes about 3 times a day which last two minutes. I have plenty of energy, but I have to deal with low back pain (which I' ve had for years, but which gets worse over time) with the addition now of sciatica in one buttock.
I am now "on vacation" from my Firmagon shots. I will see the urologist in November. During my last visit I spoke to my urologist about taking Avodart, which Dr. Charles Meyers recommends be taken during off cycles. My urologist did not think the there was proof that it works. I have just seen my primary doctor, who practices integrative medicine. I reported to him that I'm losing some control over my bladder in that I've been getting up 4 times a night, even though I abstain from drinking liquids 3 1/2 hours before going to bed. Also I'm experiencing a very infrequent loss of control of my bladder during the day, so that I might leak a couple of drops of pee before I can control myself. Erring on the side of caution, I have begun using padding just in case. So my primary doctor has agreed to prescribe Avodart, which is ordinarily used in case of BPH and, according to Dr.Meyers, will prevent the change of testosterone to dyhydrotestosterone (DHT), thereby slowing the progression of the cancer. I've had some blood work done. My Vitamin D is good at 63. My sugar level is good so there is no sign of diabetes. My cholesterol and triglyceride levels could be better, but my primary knows that I do not take statins and rely on niacin and other supplements to keep my blood vessels open. I am still exercising every day and have excellent energy considering that I have stable angina. I had angina before a triple bypass more than 3 years ago with the placement of a stent. The bypass did not eliminate the angina.
My last shot of Degarelix, also known as Firmagon, was four months ago. My low point PSA at that time was .50. I wish it had been .05, but it is what it is. It's satisfying,, after starting with a PSA of 800 (800). My PSA is now 2. My urologist and I are very pleased. He has given me two more months 'on vacation.' I was pleased to learn that, if and when I become castrate resistant, he will continue treating me. I won't have to shop around for some sort of medical oncologist. He is familiar with the latest drugs being used.I informed him that Dr. Meyers likes the combined use of Degarlex and Xtandi. I was surprised that he knows the drugs as well as being a surgeon. Recently I asked about taking Avodart. He wouldn't recommend it, so I had my primary doctory prescribe it. At my suggestion after reading Dr. Meyers, I'm also taking Metformin.
A while back I asked my urologist if he would recommend Avodart and he said there is no proof that it works. So I told my primary doctor that I was getting up 3 times a night and would he prescribe Avodart for me. He did. Everything went well with it until after six weeks I began getting sharp pains in my breasts, so I have discontinued taking it and the pain has disappeared. And the nighttime urinating did not improve. Oddly enough, I had been looking on a website with feedback from guys using Avodart and there were a lot of complaints about aching.
I am still in the middle of a time-out from my monthly injections of Degarelix. In general I feel well with plenty of energy. However, my back problems are getting worse. Bending and lifting ruins my day. Still, doing a combination aerobic and resistance exercise on my back is no trouble. I have pain when sitting. I have pain in both buttocks. On a scale of 1- to 10 it's a one. I have just started to rely on Tylenol. I guess I'll have to give in and go for radiologic exams both for the prostate and the back. I took Avodart for six weeks, hoping it wold reduce my trips to the bathroom at night. It didn't work and after the six weeks I developed nasty pain in my breasts, so I stopped taking it. I thought I would take it every other day, but then I remembered I would be taking a PSA test soon, so I decided to let it clear from my body so as not to distort the PSA reading.
It has been many months since I had my last Degarelix shots. My urologist has given me 3 more months of vacation from them, since my PSA is 3.68. I am very pleased that there has been no progression, at least for these few months. Without exaggeration, my doctor is thrilled. Today's ultrasound of the prostate shows no abnormality.In my last update I pointed out that I developed sharp pain in my breasts, which I attributed to the Avodart, so I then started taking them only 3 times a week. So far,no problem, but I wonder if it having any effect on the DHT. BTW Dr. Meyers says you can take grapefruit juice to reinforce the Avodart. Blood was drawn today to see where my DHT is. I should have had DHT tested before I started on the Avodart.
First, let me say I was deeply saddened by the news of Terry Herbert's passing.
I haven't had a Firmagon (Degarelix) shot in over a year. My urologist has calculated that my PSA doubling time is about 9 months, therefore he's giving me another 4 months of vacation time. I'm going to use the 'free' time to get cataract surgery done on both eyes. My general health is good. My back is feeling much better because my backyard projects have eased up, so I no longer have to exercise on my back. I exercise an hour a day, but I can't get the weight down. I can walk on level ground for a long time, but if I try to up the pace to a jog I get out of breath because of the stable angina. I get a mild hot flash about twice a day. Even though I'm taking Avodart I get up 3 times a night. Per Dr. Meyers suggestion, I take Metformin.
After many months on vacation from Degarelix shots my PSA has risen to 20, Testosterone 100. I fully expected I would get the usual double shots of Degarelix which one gets when first starting the protocol and after an extended vacation, but the urologist decided to give me 2 more months without any shot. A double shot is really a triple shot. A monthly maintenance shot is 80 units. One infusion of a double shot is 80 units. The other infusion has 160 units. That adds up to considerable discomfort for 2 or 3 days after the shots. Ultrasound of my bladder and kidney was satisfactory. Urine test is OK. I had a complete blood count a few months back which showed some anemia, which I have read is normal when testosterone is lowered. I take Avodart every day and I still get up 3 times during the night. To make up for lost sleep I take a nap every day. I'm also taking Metformin. Still, even with the Metformin (recommended by Dr. Meyers) and 1 hour of exercise every day I can't get rid of the belly fat. My blood sugar and my blood pressure are good. Often when I wash my hands the running water makes me want to pee. So then I have to wash my hands again, especially if my wife is looking.
After several months of 'vacation' from injections of Degarelix my PSA has gone up to 30. As usual, when resuming treatments I got two shots. The injections went smoothly. I did not suffer from flu-like symptoms during the days following as I had previously. During the days following the injections one shot was only a bit uncomfortable, but the other has caused nasty redness and pain which has lasted over a week even though I took Advil and covered the injection site with a patch of Lidocaine every day. My doctor wants me to schedule a bone scan. I'm not looking forward to it, because one has to lie on a rigid,narrow bed, if I'm not mistaken. I've had low back pain as long as I remember, but now I have another problem in that when I lie flat on my back I develop pain in what I presume is my hip. I hope the bone scan will tell me what is the reason for this pain. I also have angina. I just had two cataract surgeries which makes things seem brighter, sometimes too bright. I have been exercising every day indoors, so I recently ignored the advice not to exert oneself when the temperature is lower than about 45 degrees. After shoveling out our first snowfall I became dizzy. While shoveling the following snowfalls I did not get dizzy, just tired and out of breath. I realized I was wearing sunglasses and therefore did not get 'snowblind', which had caused my dizziness previously. I found out that one who has angina has to really bundle up and keep the mouth covered when the temperatures drop. Finally, I'm still taking Avodart and Metformin and I am a 'frequent flyer' at the Vitamin Shoppe.
A total body bone scan shows some spots in the area of the upper back and the head that are 'concerning for metastasis'. The genito-urinary area is clear. I have begun Xgeva to ward off bone fracture. No side effects from it so far. The bone scan was very uncomfortable because of chronic lower back pain that has spread to the hip area which causes pain when I am in a supine position. When this happens when I am in bed I just roll over, but I was literally strapped in during the scan. I continue to be active, like gardening, which causes me back pain, but I 'soldier on'. I have resumed taking Degarelix. I have no hot flashes. The triple shot, which is required after a vacation from Degarelix, was painful for a few days.
I've been working in my backyard vegetable garden and have been experiencing upper back pain, either because of the metastatic bone cancer in the upper back or just deterioration because of age. I continue to have low back pain and now I get pain in my right hip area while asleep. I'm now taking a monthly shot of Xgeva to slow down bone metastasis. I don't have any side effects from it. I rarely get hot flashes or pain in my breasts. Beside my garden work I exercise every day, enough to get up a mild sweat as the weather gets warmer. My last shot of Degarelix was not uncomfortable at all, but I had pain for the next few days at the site of the injection. My PSA is 24 (24). A few months ago my PSA doubling time was around 9 months. I don't know what it is now. I've been taking Metformin, 500 mg twice a day, on the advice of Dr. Meyers and with my internist's approval. In his most recent video Dr. Meyers is suggesting 1000 mg. twice a day, which I will ask my internist about. I've been reading advice by a Dr. Mohad who writes for ustoo.org, who does not recommend practically any supplements while dealing with prostate cancer. On the other hand Life Extension (lef.org) recommends taking many, many supplements for dealing with prostate cancer. Of course they are in the supplement business. I myself have very expensive urine.
My latest PSA test shows a drop from 25 to 17. I'm taking Xgeva because a total bone scan showed two small lesions in my upper back which cause some discomfort only when I do strenuous work. With the Xgeva I'm taking Vit. D3, calcium and I continue taking Vit. K2 with the idea of removing calcium from the circulatory system and putting it in the bones. I just had my monthly shot of Firmagon. The last shot caused much pain. This time I haven't needed any painkiller, at least for the first day after the shot. In addition to lower back pain I'm now getting pain in the right hip area mostly when I'm sitting for a long time or in bed. However, an X-ray shows no problem with the hip itself. I do not need any painkiller for relief. I simply change my position. I still continue with my 'very expensive urine' vitamin regimen I'm still exercising an hour a day but only 1/2 an hour if I'm doing heavy gardening work. I just had my 83rd birthday. With my PSA; going down I've told my kids that they will have to wait a bit before they get their inheritance.
This entry is about the bad experience I had during my recent visit when the nurse caused me much pain. She was injecting the Firmagon subcutaneously while I was lying down in my abdomen, a procedure I've had many times, sometimes with a little bit of pain. This time I can only say what the nurse did was stab me, which caused me to pull away and without hesitation she stabbed me again and she pushed the plunger in much too quickly. which adds to the discomfort. When I sat up I felt rather queasy in the stomach but I recovered quickly so she was able to give me another shot in the shoulder of Xgeva, a drug I get to deal with metastatic lesions in my upper back. I don't have pain in that part of my back except when I'm working in the garden. I've been taking Avodart, yet I need to get up 3 maybe 4 times a night.
My Firmagon shot of last month went very badly. I complained to the doctor that the only way to describe what happened is that the nurse stabbed me twice. So the doctor switched me to Lupron. The shot in the buttock was a snap. It's been three days now since the shot and I have no negative reaction. I'm keeping my fingers crossed. I've seen a new primary doctor closer to home. I told him I'm taking Metformin even though I'm not diabetic and I asked if he would write a new prescription for it. He's OK with it as long as my liver (or was it my kidneys) are OK. He referred me to a cardiologist because of my bypass and angina history. I'm thinking seriously of not making the appointment with the cardiologist. In the recent past a bone scan showed a couple of lesions in my upper back. I feel pain there only when I do something strenuous causing pain first in my lower back and then the upper back. After I stop the activity (usually digging in the garden) I'm able to stretch my back and when I hear a little click in my spine I feel quite a bit better. I'm still exercising an hour a day, sort of a combination of aerobics and resistance training at the same time. I've been getting more now at night, sometimes 4 times. During the day, too, I can't stray too far from a toilet. Getting close to the diaper stage.
I have discontinued with Firmagon after I complained to the doctor how the nurse badly botched up the injection. So I'm on Lupron now. There have been no side effects. Last May a bone scan showed lesions in my head and back that are "concerning". So I'm on Xgeva now. An X-ray of my back last week showed nothing remarkable (which is not to say that I no longer have metastasis in the back). My urologist wanted a bone scan too, but I turned it down because for me it's a very uncomfortable procedure. I went to my primary doctor today and my blood pressure is 110 over 70. I have slight anemia. I'm getting the garden ready for planting and I end up with a lot of lower back pain which goes away after a few hours and occasionally Tylenol. I'm still doing my daily exercises, sometimes while on my back if I have done too much physical activity which aggravates my lower back pain. I'm taking Avodart and Metformin. I'll be 84 soon.
Nothing much to add. The metastatic lesions, which were described by the radiologist as 'concerning' don't cause any pain. I have a new primary doctor, an internist, which I chose because he's closer to home. Turns out he's a specialist in geriatrics. I'm still taking Metformin and Avodart. I'm having a hard time controlling my craving for bread. Working hard in the garden, which aggravates my low back pain. All the veggies have been 'put to bed', so now I just have to wait for the coming hot weather to do its thing.
I have taken Xtandi for three days now. That's 4 pills a day. So far I have not experienced any side effects. While exercising using proper posture I get no pain. While working in the garden I get pain in my back, always in the same spot. A few hours after I stop working in the garden the pain subsides. Xtandi, so far, has not changed that picture. It was a bad week to start the Xtandi because the very hot weather we've had, by itself, makes one feel lousy.
I've just started taking Xtandi on top of the Xgeva, Lupron and Metformin and Avodart. Apart from the hit to my wallet everything went well, with just minor hot flashes. Then 3 weeks into the Xtandi I began having heartburn. Bragg's apple cider vinegar or baking soda seem to help. I did a lot of gardening. Friends and family have been enjoying my tomatoes, cucumbers, zucchini, etc. I made it to age 84 in July.
I am now on Xtandi. Still taking Xgeva, Lupron, Finasteride. Hot flashes are not too troublesome. PSA much lower than I expected, but I'm not pinning my hopes on that. Though I am sleepy I still have good energy, working out every day. Working too hard in temperatures below 50 degrees is hard on my angina. I have metastasis to the bones, a couple of lesions to the back. Xtandi is very expensive so I'm spending my children's inheritance. My doctor asked if I would be interested in Provenge. Even though Medicare covers it, at this point I would not be interested. My primary doctor wants me to take flu and pneumonia shots and a statin drug, all of which I turned down. I'm putting my faith on all the supplements I take. I have back pain when I work in the garden, and I can't tell if it's because of the metastasis or the back pain I've had for decades. I've developed what I think is a muscle pull in the shoulders and I have to adjust my workout, which includes arm and leg resistance. Very frustrating. My blood pressure is 120 over 70. My A1C level is good at 6.00 I take Metformin to keep my sugar under control. I'm now 84 yrs. old. I do local daytime driving only.
I'm still taking Lupron shots (3 months), Xgeva (every month) and Xtandi (4 pills every day). The result (from the Xtandi) is extreme fatigue. Without telling my doctor, I reduced my pills to 3 a day only for a week. I believe I felt less fatigue. I was taking, on my own, Avodart, until I read that Dr. Snuffy Myers advised against it. I had started taking it on his recommendation. I have suffered from what looks like allergy symptoms for many weeks. I feel a bit of chest congestion. I'm still doing low-level exercises an hour a day. I'm getting up 2-3 times a night. I've been getting leg cramps, usually after a long night's sleep. I'm still taking Metformin to reduce the risk of diabetes. I'm also taking lots of supplements.
Jack's e-mail address is: ritandjack AT gmail.com (replace "AT" with "@")