So today at my husband’s monthly oncologist appt for labs and and bone shot (xteva?) our MO referred him to a rheumatologist for increased pain. Specifically, a spot on one arm that periodically causes intense pain requiring a norco, and more bothersome- increasing constant and unrelenting pain in both of his legs, mainly below the knee but gets higher as the day goes on. He used to be able to stand for an hour or so but now only 15/20 minutes before he needs to sit down. He describes it both as “achy” but sometimes “sharp” and “shooting”. He isn’t entirely clear whether he is feeling it in his muscle or bone but when palpitated by Dr his shin bones were painful. He was diagnosed August 2017, PSA 556, extensive node involvement and bone marrow involvement to point of needing blood transfusions in ICU until chemo kicked in. Followed with 9 or 10 rounds of taxotere, Lupron, brief break from taxotere until PSA started to increase, and then started on Xtandi, now on month 7. He had extensive (too many to count, from lower legs to top of cervical spine) bone mets, so it seems like it would be reasonable to think this is active cancer in his lower legs. But MO referred to rheumatologist. Seems like the obvious answer would be to look for cancer activity in his legs? Am I missing something? I’m just concerned as it seems like MO refers every symptom to a specialist instead of the obvious...well he has stage 4 high volume metastatic cancer...was previously healthy, so it would be doubtful that in the past year he has concurrently developed a rheumatological disease. Sorry, am frustrated. Looking for guidance on multiple issues...should we consider starting to receiving primary care from our MD Anderson specialist, Dr. Korn, if this referring out for every symptom is a normal occurrence or sign of his youth and limited as well as broad experience, and whether the symptoms he is experiencing sounds like bone activity. If you made it this far thanks for reading my rambling, lol. Just a very awake, very worried wife trying to be a strong advocate for my husband. 
Katy
Increased pain : So today at my husband... - Advanced Prostate...
Increased pain
There are many on this site smarter than I but like you , this makes no sense to me. If it looks like a duck and quacks like a duck , it’s probably a duck. You need a new MO it sounds like to me for better pain management and perhaps some palliative radiation. Let’s see though what the boys have to say on this site. Lots of great knowledge here.
Schwah
I agree, and also am curious to hear what others have to say. He is on morphine 24/7 and increased dose yesterday, but the morphine is starting to have its own side effects and I think maybe a pain management specialist would help. We saw a radiologist a few months ago. She said he was not a candidate for radiation- which we knew from the beginning- but I also thought palliative radiation was an option but that has never been offered to him. Thanks for your input!
I get a bone scan once a year to check for signs of metastasis. I also get a cat scan to check the organs for the same. I believe this is the best way to monitor the potential spreading of the disease.
I think that sounds very reasonable. Joe has been diagnosed for a year and 3 months and has had many, many scans, because of the aggressiveness of his disease. However, our MO has never ordered a bone scan. He only orders PET scans and CT’s. He did have a bone scan last February when we went to MD Anderson, and seeing as we are nearing a year then maybe it’s time to request one. He did order a PET. I don’t really understand the differences in all of them, to be honest. Thanks for your response though. Good to know what a reasonable standard of care might be.
Assuming your husband has had a bone scan and a CT scan, and they are not showing a met that might be causing pain, I’d consider physical therapy.
I was incredibly stiff when I started ADT. Chemo made it worse. Exercise helped a lot. I had back pain where I had a bone met that was radiated. A surgeon told me to have major surgery to fix it. I got a second opinion from a great neurosurgeon and he said I did not need surgery at all. He prescribed Gabapentin and physical therapy. The physical therapist was great and I improved dramatically. Stiffness was gone. Pain in my bones and joints improved. They had a hydro therapy pool that had a treadmill in it that I ran on. And the water jets were very helpful, too.
I guess my point is there are ways to get relief - and this option is easy to try and see if it helps. And it helps improve your husband’s fitness, too.
Hope this is a useful idea!
James
Thank you James! That is all useful and good information! His most recent scans were an MRI and CT. They did show degenerative changes consistent with metastatic disease but as always our MO says you can’t tell whether it is healing or progressing. I would think there is some threshold of time by which you would be able to tell. He was having shoulder pain at that time and referred to and went to physical therapy. It was immensely helpful so maybe it is time to try that for his legs as well. He has wanted to exercise and tried once or twice but has reached about 7 or 8 minutes before having to stop which was very discouraging for him. He’s so tired. He was denied radiation in the past due to the extensiveness of his bone mets, but a PET was just ordered so maybe if there is a specific spot to radiate they would do that. He is on morphine and norco but maybe gabapentin (a nerve blocker I believe) would help the pain in a different way. Thank you for your response. Much appreciated. 😊
It may be that the oncologist suspects paraneoplastic syndrome. Sometimes the immune system gets overactivated by the cancer and and triggers an autoimmune reaction throughout the body, often with neurologic symptoms in the extremities. The rheumatologist can check for certain biomarkers and start him on some medicines that may dampen his immune response.
That’s really interesting. I actually don’t think that is what he suspects- because he has referred Joe out to about 5 different specialists for various symptoms that all ended up being cancer related- but Joe has had neurological symptoms and has already been seen by and cleared by a neurologist, so perhaps he does have the syndrome that you mention and maybe this won’t be another wasted appointment day after all! Thank you!
Hi, not currently a full-fledged member of your club, and I hope never to become one, but I do regularly troll the site. I have had somewhat aggressive autoimmune issues for about 8 years-- I am 60 now. I have been having pain and numbness from my gluts to my achilles for over the last year-- I was so weak I could not walk more than a couple hundred yards before getting so weak I thought I would fall. I could not carry my 25 lb grandson when I used to carry hundred pound bags of cement for hours at a stretch. It progressed to balance issues, muscle spasms and intense cramping, despite taking a heavy dose of autoimmune drugs. I won't bore you with all the medical details, but a neurologist I saw in June told me it would never get better, but physical therapy might slow it down and improve my balance (I fell three times while on vacation in May). He was basing all this on an abnormal brain MRI, which he diagnosed as cerebral microvascular disease.
Afterwards, I talked my Rheumie into a test of Gabapentin (300 mg x3 a day). Within a couple of days the spasms were gone and my balance was 90% better. Subsequent PT has vastly improved my balance and exercise tolerance. Because I take so much Prednisone my Endo ordered a bone density test in late October. Funny thing-- when the results came back last week my lumbar/sacral area was so "chewed up" it could not be used for the bone density test. My therapist had previously suggested my symptoms were consistent with spinal stenosis of the lumbar spine. Looks like she is right. I hope to have an MRI in the next week or two to confirm.
There was a point to all this rambling--- don't assume that all of your symptoms are all interrelated. We chased this first as a potassium and magnesium deficiency, then as an autoimmune flare, then as a brain issue (which is a red herring I have come to learn). In the rush to link this to something I already had, 2 Rheumatologists, two Neurologists and an Endocrinologist raced right by the most obvious source of my pain and weakness to try to wrap it all in a neat package. Without an observant and caring therapist and a random observation on an unrelated test, we still would not have a path towards a potential diagnosis. Even if this is cancer- related, a Rheumatologist might give you a different perspective to deal with it, and the pain it causes. In the meantime, see if you can talk one of your doctors into the "Gabapentin test."
Good luck and thanks for letting ramble.
Seems pain is consistent with Claudication in lower extremities. This is related to diabetic neuropathy. Spinal stenosis would be felt in entire leg and would be relieved by lying supine, just lower leg.
Feeling sad and discouraged 
PSA Fluctuation and Zytiga
Today, received first infusion of Taxotere, while PSA <0.02...
