Joint pain - ADT

i also have pelvic pain and they now say HT is causing the arthritis. It run in my family so concerned. I had HDR & radiation and was given the option to stop HT at 6 months and not take the 3rd shot. Conflicted as also don't want to take any risks but if they have blasted the cancer then why stay on it?? So sorry I am not much help to you as I am searching for answers too but thought I would say you are not alone

I will look into more excerise - thanks

Gearlose and Cannuck77,
Thanks for replying, and I apologize for the delayed response - I became sidetracked on a different thread that turned out not to be relevant and then forgot to look at this one again.

Your responses were helpful, in fact - it's good to know that this issue is not mine alone. I haven't solved the problem yet and maybe there isn't a solution but I'm continuing to work on identifying the cause. At this point, I strongly suspect the ADT. Androgens (and estrogen, which is produced by males as well as females) play an important role in maintaining muscles and cartilage. My theory is that knocking these hormones out destabilizes the musculoskeletal system for this reason. Actually, I have been able to dig out the informaion that joint pain related to anti-hormone therapy (including treatment with leuprolide) is a well-documented and much-studied phenomenon in breast cancer patients. However, none of the oncologists at the NCI comprehensive cancer center treating me for prostate cancer think my theory that something similar can happen in PC patients is correct, although they can't provide a rationale for this point of view (other than that they suspect its arthritis unrelated to PC. However, a rheumatologist diagnosed it as systemic tendonitis due to muscle atrophy). I suspect the views of the oncologists reflect the fact that most PC patients don't have this problem.

I'm scheduled for a followup soon at a second NCI comprehensive cancer center, where surgeons dug the tumor out of my quadriceps last fall. Since these doctors are experts in muscle and other soft tissue tumors, I'm hoping they either agree with my theory or can definitively rule it out with solid evidence. In any case, the problem is quite acute. The PC doctors have given me a pretty short estimate for continued survival (a few years) under the best of circumstances and I'm considering dropping the ADT to maximize QOL for at least some of this time. In any case, I'll post again after my visit with the sarcoma surgeons. Cassuck77, in answer to one of your questions re exercise, I've been undergoing intensive physical therapy to address problems with loss of function in the leg from which the tumor was removed as well as joint pain, but this mostly involves resistance exercises - my doctors are concerned about potential damage when I stretch muscles. So far it hasn't helped.

I would also greatly appreciate comments by other patients who have been dealing with this issue.

Buffalo and little nm,

I'm curious, have your doctors considered switching to Zytiga rather than the casodex?

Jim

In  a nutshell, I have had a good deal of muscle/joint pain since being on ADT2.

Exercise helps in a sense, but there is also joint pain resulting from exercising also. I think it would be much worse if I didn't exercise.

I am now off this crap. Stopped the Casodex a week ago. My next Lupron shot was scheduled for the 27th. So I'll consider my being officially off HT to be on the 27th. I'm hoping to see improvement, but it might not happen until the summer.

Mel

Thanks everybody for the unexpectedly rapid response. I'll respond to each post in the order that it arrived, but first a brief clarification of the situation. First, it's not clear whether my prostate tumor is castrate-independent yet, although there are suggestions this will happen soon (slower than expected drop in PSA). Second, it's also not clear whether it's metastasized yet, although I've been told this is likely to be the case soon and I'm now becoming symptomatic for metastases - a bone scan is scheduled for a few weeks. I think it's usually the case that PC patients don't start taking Casodex until the disease becomes metastatic. In my case Casodex was added to the mix when testosterone unexpectedly spiked long after the time when this could be attributed to flare (which was also likely inhibited by the initial treatment with degarelix). Third, although the rheumatologist diagnosed tendonitis and attributed it to muscle atrophy, he didn't make the link between muscle atrophy and ADT, although he didn't rule it out either - it's just too far outside of his area of expertise. But the fact is, ADT does cause loss of muscle mass. What isn't at all clear, however, is why PC doctors haven't apparently made this connection between ADT and joint pain (or maybe they have and I haven't found it in the literature yet, but I don't think this is the case). Once again, I wonder if this is because a relatively small fraction of PC patients experience joint pain.

littlenm/Nancy: Your husband's signature is in fact similar to mine and it sounds like he's having a tough time - I hope this improves soon. His symptoms sound remarkably similar to mine, and I suspect you are correct this is a side effect of ADT. I've tried to knock down the pain with Tylenol and Ibuprofen but neither worked. Interestingly, in women with low estrogen levels, analgesics often are less effective, probably because of effects on pain receptors - may be something similar happens in males with low estrogen. The pain was reduced a few weeks ago for a few days while I was taking hydrodocone after a new surgery to fix radiation damage but it returned when I stopped taking it. The rheumatologist offered more narcotics but I've decided that the intestinal problems (as well as cognitive issues) they cause trump their ability to get rid of joint pain. I also experience some fatigue, but much less than what I experienced toward the end of radiation at the end of last summer. I wish you both the best of luck.

Wampuscat: My doctors have not prescribed Zytiga yet, although I suspect this may happen soon. The reason why in my case is that it's generally not brought into the picture until the tumor is castration-independent. In any case, joint pain is a reported side effect for this drug as well, maybe for similar reasons.

Compiler: Sounds like you're in the same boat. Theoretically exercise should help because it builds up muscle mass, and I've been working hard at this together with protein shakes that also promote increases in muscle mass. In fact, as Gearlose described in his earlier post in November, walking a lot can help, and for several months after I was diagnosed and started ADT last spring until radiation-induced fatigue set in, I walked the approximately five miles round trip between home and work every day and also spent several weeks hiking in the mountains of northern New England. But this was before I went on Casodex in the fall and the subsequent leg surgery, which I think has enormously exacerbated the problem by promoting muscle atrophy, and now inactivity associated with the more recent surgery related to PC has ramped the problem up again. As with you, exercise now is a double edge sword of sorts, and I just don't know how to deal with this. It must be terrifying to be dropping the ADT however - the prospect of doing so certainly is for me. Good luck.

Gearlose: a belated thanks for wishing a swift recovery from the leg surgery. Healing from this surgery has gone spectacularly well in the sense that the wound healed nicely and I was able to start walking again much sooner than expected. The problem is that I'm very limited in how far I can walk, and it's not far enough apparently to reverse the tendonitis.

Anyway, thanks again for the help, and good luck to all of you. I'm sorry that you guys are having similar problems, but it's helping me to understand the problem to know that it's not unique to me, and I'm grateful for your posts. I'll post more once I have more information.

Bill

Bill:

>>>>>>>>>>>>>>>>

 I think it's usually the case that PC patients don't start taking Casodex until the disease becomes metastatic.

>>>>>>>>>>>>>>

No, quite the opposite. Many (most, I think) start HT with Casodex and Lupron. I started Casodex 2 weeks before Lupron so I could avoid the flare.

Also, I am slightly uneasy about dropping HT, but only VERY slight. Mostly, I am OVERJOYED to get off this garbage.

I believe joint pain is a known problem with HT. I was certainly told about it.

Mel

I used to take the the glusamate and chondroitin which helped joint pain somewhat. I realize my joint pain is age related not a pca drug side effect. Having said that I switched from fish oil, due to nasty taste, to krill oil for the omega3. As it turns out the krill oil is also great for joint pain also. I wanted to mention this, as it may relieve joint pain, whatever the source. Exercise consistently, stretch, resistantance, core, cardio. Do it. enjoy each day. what else you got to do? Movement however slight, is Not a violation of the UCMJ.

Buffalo Will,

I'm a relatively new member here. I've received a warm welcome and I want to extend the same to you.

I'm sorry you're here, but I've found great people here so far.

I have no specific answers for you, but I hope you find what you need. It's a ****** of a disease that seems to manifest itself differently every single time.

Damon

Mel,

I'm learning the depths of my ignorance, although for clarity I should point out that some of us are being shot up with a different commercial version of leuprolide, Eligard, rather than Lupron (I think the difference is in long-term delivery mechanism). But I'm curious about how you ended up on Casodex beyond the frequently short-term course of this drug designed to block the flare induced by leuprolide. For a while after the diagnosis last spring I was under the mistaken impression I might have a disease-free future if we played the cards right, and so I pushed for more aggressive long-term ADT that included Casodex right from the start of ADT. However, none of the oncologists thought it would help, although I now understand that they always thought the odds of beating back the disease completely were essentially zilch. This was part of the reason why they were reluctant to add Casodex to the mix until the T spike occurred, at which point everybody seem to agree it was warranted. Was your case metastatic at diagnosis?

I greatly appreciate your vote of confidence in the Krill oil approach suggested by Logoslidat. This sounds like it might work, and I'm definitely going to try it if the oncologists approve (and perhaps even if they don't approve if they can't back up their position with data). This is a great example of the usefulness of these forums.

Damon, thanks for your warm greetings and best wishes. It looks like you're even newer to this business than I am. I feel badly for guys like you diagnosed at a significantly younger age - this has to be tough. In any case, I wish you the best with your treatment

Bill:

Both Drs. Hussain and Lam (two world class doctors, I think) recommended I go on ADT2. I think that is fairly standard. Nothing unusual.

Incidentally, some folks are on ADT3 (Lupron, Casodex, and Avodart). There is also an ADT4 (I forgot what the 4th element was).

Mel

Buffalo Will,

Great post. Seems I'm in a loss of were my pain is coming from. However, I have had two surgeries in the past on my L-4-L5 and C-3-C4. Past couple months, because of pain in my lower back, right hip\butt and at times left hip/leg, I've been taking morphine SULF ER 30 MG AM/PM and oxycodone and Acetaminophen 10/325 mg a day around mid-day. This past Saturday, PM, I didn't take a morphine (kind of a test to see if I could do without it)! But, yesterday, I woke up around 4PM with a 24 hour virus and had to deal with that. Most of the day, I was in SO much pain, so yesterday morning, I started back to my regular schedule. This morning, I'm feeling a lot better and the pain has subsided.

The first week of the 2014, I decided to get a new oncologist. January 31th, I had my last treatment with my wonderful urologist (who DX my high volume, very aggressive advance prostate cancer! January30, (previous day) I went to see my new oncologists (first visit), she ordered a CT, full body bone scan, and took six vials of blood. My first and former oncologists, was in his 70's, only working one day a week and I only visited him twice for consult. This Thursday, I return to my new oncologists and not sure what to expect. I did get copies of my CT and BS, posted them and the BS looks good, but not sure about the CT!

My first visit with new onc, I ask her about the hip and back pain and she said she could treat. I'd like to scale down on all the pain meds.

This isn't a fun journey and I'm READY to have less pain as I've been in a lot of pain since June 2012. I hate to complain because I know there's many people out there that's worse than I.


Everyday, I pray and have everyone in my thoughts.

Dave in Bartlett, TN

Dave,

Thanks for your post. It sounds like your pain is from mets. In my case I think it's mostly related to joints and muscles for the reasons I described earlier. Although it's tough at times, I suspect the pain I'm experiencing is far less than yours. Thanks for your words of support. I wish you the very best with your new oncologist.

Marie and Jim,

Thanks for the steer toward the NCI clinical trial. At this point I don't think my disease has become castrate resistant, so I'm not eligible for this trial. If this status changes in the future I'll check to see if they're still enrolling patients. Re your comment to Mel about Krill oil and omega-3; the "something" about omega-3 you're probably remembering is that there was a recent report that supplementing diets with fish oil/omega-3 is associated with a greater risk of PCa. I believe this finding was controversial and has been disputed by professionals. In fact, there's solid evidence in the literature that omega-3 is good for PCa patients. But if you're also thinking of taking it, probably best to have this plan vetted by professionals, as I will.

Bill