I was diagnosed with Stage 3b melanoma in August of 2011. I am currently NED and grateful. I was on Leukine treatment for 10 months. I experienced a fair amount of bone and muscle pain, primarily in my limbs that increased gradually over that 10 month period. I was anticipating a return to feeling well within a month or 2 of the end of treatment. The pain never went away. In fact, it has gotten worse. My oncologist says that he has never seen one of his patients continue to have pain after Leukine.
After failing to find answer in my home city of Des Moines, IA, I made a trip up to Mayo clinic. The melanoma oncs up there had the same thing to tell me. I’ve seen a neurologists, 2 different rheumatologists and a pain manager doctor. Nothing has helped the pain. I wanted to reach out here to see if anyone else had a similar experience, and if so, I’d love to know what has or hasn’t helped. I’ve tried modifying my diet. I’ve tried to exercise my way back to health. Nothing has helped. In fact, exercising has made things worse. Any help anyone can offer would be appreciated.
I am wondering if you still need another opinion by a really good internist. Could you have an autoimmune disease? Has anyone suggested a short course of steroid treatment? I don’t want to second guess but I wouldn’t think the leukine would still be the culprit. The experts on Leukine are at the Northern California Melanoma Center: http://www.melanomacenter.com/ Lynn Spitler is the doc there. You might see if she ran into this issue before. Otherwise, I think a comprehensive work up by a good internist may uncover the cause of our pain. I hope so. Let us know.
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