Posted 12/15/2013 8:10 PM (GMT 0)
Thanks David; your response (and your earlier posts to this thread) have been helpful, in part because they've convinced me that I'm not a freak of nature with the similar weird constellation of problems you've experienced. I'm a little reluctant to start a new thread at this point because I don't want to lose continuity with your thread. This could make it more difficult to discuss information about your case that you provided in earlier postings, which could be helpful to my efforts to figure out my case. I'm also hoping that you and others visiting this thread might find my information useful as well. I do recognize, however, that at some point a new thread might be warranted because many of the postings to this one are focused on extraneous issues (I have to tell you, I'm impressed by the number of friends who are cheering you on!). Logo, if there's a way to maintain continuity in a new thread, please let me know.
An intro to my case, some details of which are in my signature - I'll be as brief as possible but it's complicated.
Until last spring my only interactions with the health care system for the last 45 years were my annual physical and a screening colonoscopy. Like you, I rarely come down with a cold. Last April I was diagnosed with a large Gleason 9 prostate adenocarcinoma, extracapsular (but no bone mets) after a PSA reading of 32 and a severe and rapidly worsening urinary retention problem. I was immediately injected with the LHRH antagonist Digarelix by the community practice urologist who was treating me, but three weeks later I switched to treatment at a major cancer center here in Buffalo. The oncologists at the cancer center injected me with the LHRH agonist leuprolide and scheduled radiation therapy beginning late July. When the urinary problems unexpectedly continued to worsen despite the ADT (?!), the radiation treatment start date was moved up to late June. I completed radiation therapy in early September.
Radiation was much tougher than expected or is usually the case for PC patients, apparently. It was accompanied by frequent nausea and intestinal problems - in fact the radiation techs and I set up a signaling system to shut the beam down when I had cramps that often left me doubled over, because I didn't want them suddenly irradiating my brain instead of my pelvis. It's been necessary to self-catheterize since the onset of radiation treatment, and this need continues. I also lost a great deal of weight, which continued until recently (to put the magnitude of weight loss in terms similar to those you employed, since April I've made 10 new holes in my belt with my power drill). about half way through radiation therapy I discovered a lump in my quadriceps that was unmasked by the weight loss. I'll save the details for a different forum perhaps but after ignoring the lump for a few weeks (I wasn't aware that lightning strikes cancer patients twice!) I was diagnosed with a second, unrelated, very rare tumor. This one was resected by surgeons at Memorial Sloan Kettering in late October. Recovery from surgery has been spectacularly fast according to the surgeons, probably because I was in great shape despite everything else. To prepare for radiation I began trekking the five mile round trip from home to work and back every day beginning the day after I was diagnosed in April. I also went on two 10 day-long strenuous hiking expeditions in the mountains of Vermont, once in early June and again in September to prepare for surgery. This tumor won't be coming back - it's likely benign and the surgeons dug a huge hole in my quadriceps when they took it out. Shortly after returning to Buffalo from the second trekking expedition in Vermont, my testosterone spiked and the antiandrogen bicalutamide was added to the mix.
Despite the ability to easily climb mountains in September, since the surgery in late October both upper and lower body strength and muscle mass have declined precipitously to the point where I have difficulty climbing one flight of stairs. I could barely lift our 15 lb Thanksgiving turkey into the oven a few weeks ago. Similar to your experience, my legs and arms are a fraction of the thickness they were last spring. These changes have been accompanied by a sudden ramping up of pain in what at times seems to be every joint and muscle in my body. After ignoring this issue for a few weeks, the pain became severe and so I brought it to the attention of the urology clinic last week. My theory was that it was caused by the leuprolide because this drug is known to cause the loss of lean muscle mass, and joint and muscle pain is frequently reported by patients treated with this drug. My urology oncologist dismissed this theory and proposed his own - that on my treks in Vermont I was bitten by a tick and had contracted Lyme disease. He arranged for a visit to a rheumatologist last Thursday, who ruled in favor of my theory, but indirectly. He definitively diagnosed the pain in my shoulders as tendonitis. When I asked what was causing it, he told me that muscle wasting can cause tendonitis because the tendons no longer are properly attached to muscles. Less clear is whether tendonitis is responsible for the pain elsewhere in my body, mostly because I forgot to ask.
So one possibility is that the tendonitis is occurring in lots of places as a secondary effect of muscle wasting associated with leuprolide treatment, which was perhaps exacerbated by the prolonged bedrest after surgery (a recently published study showed that even short periods of bedrest can cause significant muscle atrophy). This of course may not be relevant to your case, since I think you pointed out earlier that you were not taking ADT drugs. However, although this scenario seems a plausible explanation for my case, I'm not convinced it's the entire story. I suspect that it's also related to muscle wasting associated with the still unexplained massive weight loss, which is not a frequent effect of ADT - more often ADT causes patients to gain weight. But a potential ADT-independent component to the muscle wasting problem is of course relevant to your case. Now that I'm realizing you also underwent radiation therapy (I missed this yesterday), I'm wondering if this is perhaps a relevant common denominator.
One question I have for you, then, is this: have you been diagnosed with tendonitis, and if so how are you addressing this problem? Also, do you see any other potential overlap between the similarities in our case histories that you think might shed some light on the problem for both of us? I realize that despite these similarities, everybody's disease is different and this approach to solving the problem may not be informative. But I'm hoping . . .
Finally, I think you indicated that you were catheterizing for a lengthy time until this problem was solved by surgery - is this the case, and if so, would you be able to tell me what the underlying urinary problem was? The long-term need to catheterize is another unexpected development for me and I've yet to encounter anyone else with this particular issue. My physicians are telling me that in my case it's likely due to swelling of surrounding tissue induced by radiation, and that it will eventually resolve on its own. I hope they're correct. But it's now been almost four months since radiation therapy ended and I'm getting nervous.
Thanks again, and I apologize for this very lengthy post.
Bill
P.S. I noticed your comment sometime earlier in your thread about how you hoped the Pats were going to cream the Bills, or something to this effect. All's forgiven, especially if you can help me with these problems!