Decreased PSA with increased pain?

TeamChris
I can't help but my heart goes out to you two ! Hopefully guys with experience with chemo will chime in ASAP.
I would think his medonc would have an answer?
Best to you both
Bob

Teamchris,

My numbers and timing were similar to your husband's, though the mets were not as numerous so we chose not to do chemo at the start. My pain did get worse during the very early stages of my hormone therapy. I ended up unable to move the pain was so bad. Eventually, a hospitalist got me on dexamethasone for a couple of weeks and it worked wonders. It is a steroid sometimes used for bone pain in cancer patients. You probably can't take it for long, but I did not need to. Once I got relief, the extended release morphine and oxycodone for breakthrough pain work fine.

Don't be afraid to have the doctors up the dosage. They should be able to get the pain under control. Pain management is always the first thing I discuss with my medonc every time I see him. My MO and I see eye to eye about this being a top priority of my treatment. I wish you good luck.

TeamChris

Sorry to hear about the pain but it's great to see the decline in PSA!

I had pain before I was diagnosed, but it was mostly in my pubic and hip areas where my biggest metastatic problems were. When I started treatment, My pain/discomfort increased from nearly every therapy I went on. My initial pain was due to cancer but I think the subsequent issues are more related to side effects. My list is long but the condensed story is that ADT caused muscle aches. Then chemo left me with neuropathy in my hands and legs. Everything got worse after my surgery, which was also when I started Xtandi. Muscle, joint and bone pain had become a daily reality. I could barely bear the pain in my shoulders and back and was heavily medicated regularly. After 8 months on Xtandi, I went off it and my all-over bone pain slowly got better. I also was just finishing radiation at this time so that may have provided some relief as well.
Zometa infusions also seemed to cause bone pain flare ups. I still manage my pain but the majority of it is back in my initial pubic area and hip.

All of this pain and treatment was part of a concentrated process. I didn't know how I was going to get through it at the time but most of it has improved or is at least manageable with various pain medications for break through pain and a steady diet of ibuprofen and acetaminophen and lots of ice packs and warm tubs. Exercise actually also helps and of course water and a good diet may provide marginal relief.

No one knows for sure, but most of my docs agree that my residual bone pain is due to nerve damage from the various aggressive treatments. I suspect that some of this could still heal but I also expect that it will continue to take time. One of my medications includes Lyrica, which is common for nerve damage patients like those with fibromyalgia. I have found this to be effective so far.

I am now seeing a palliative care doctor that is the quarterback for my pain control. My urologist and oncologist ask about pain but we spend more time on urology and cancer issues in my appointments now. I switched all of my medications for pain to the palliative care doc.

So, I don't know what's causing your pain but it's a good question for your doctors. As some of the other guys have said, managing your pain is important first, then get comfortable so you can deal with everything else. It can get better!

I apologize for my long reply but wanted you to know you are not alone.

Good Lord Gunner34, I am glad you wrote that as it inspires me to reel in my frustrations with the slight pains of such, in life generally. The pain is real thou. Ask anyone who has dealt with a cable company. lol
How many on this site and elsewhere in life are dealing with continuous pain silently, soldering on, head held high and low sometimes to be sure. Its quite remarkable actually. So many cases we hear about on the forum are skirmishes in a war not declared and one that may not even exist. You and many others are in a full scale frontal, and flanked battle in a fully declared war. Some surrounded and as in a counterintuitive moment of a custerless last stand...stand they do. I mentioned on a thread recently that If you really want to lose weight, one should go...like half the world...hungry. I...no vow here{a respected religious once said vows are evil... Yoda...maybe or a name we cannot mention maybe} WILL think of folks like you and all the others be fore I press submit...Darn it I just saw the my own antithesis to that,i.e. am i not pressing that submit button in the spirit OF the real heroes of life....
What to do...What to do. Am I the only one here cursed/blessed with these kind of thoughts. Anyway Gunner34 you take care of yourself and I will pray for your relief. ps compiler you may ignore this...tee hee... just joshing you{josh is one of my sons name} mutual respect... love ...even understanding of a sort is recognized by those related.........Damm I love a new day...doncha all??

Post Edited (logoslidat) : 11/17/2015 10:09:29 AM (GMT-7)