I saw the Urologist today to discuss results of the pelvic MRI. (for anyone not familiar with my recent situation I had abnormal PSA tests signifying potential prostate cancer) Everything was completely normal on the MRI. This is really good because it means they found no tumors or anything like that. They also didn't find any benign issues like enlarged prostate, hernia, or any inflammation at all. So for now I'm kind of in a holding pattern but I guess it is for the best at this point. The doctor is stopping short of doing a biopsy. He said that based on the issues I have, pelvic pain, rapidly increasing PSA in short time, normal physical exam, normal MRI, that at age 39 the odds of Prostate Cancer are around 1%. He said he feels this is an inflammatory issue, although he cannot tell me why. His suggestion is to try and get as much anti-inflammatory meds into me as I can tolerate over the next 2 months and then repeat the PSA again. We are trying a nasal inhalation NSAID to see if I can avoid the stomach issues I have when taking NSAIDs orally. So while I do not have a definitive "you do not have prostate cancer" he feels pretty certain that I don't, and if I did it is not spreading so there is time to watch and wait.
After meeting with him I had a talk with my onc who agreed with the assessment. She said there was no point coming down there if the MRI was normal because they would watch and wait too. It seems no one is eager to give a CML patient an invasive biopsy with high risk of infection. I guess that is good.
On the CML front, my PCR came back negative signifying the first two back to back negative PCR's I have ever had. I have had negative PCR's for about a year or so now, but each time the next one would go slightly detectable and then undetectable again. So this time it stayed below the detection line.
For better or worse I have made the decision to change TKI drugs. I'm tired of tolerating the muscle pains from Gleevec and there is a part of me that wonders if the screwed up muscles in my pelvic floor are somhow related. I figure I shouldn't have much to lose. Sprycel seems pretty safe in the sense that if I do have a problem with it (myelosuppression, pleural effusion, etc) I could always stop the drug and even go back to Gleevec if I have to. But on the chance I switch and I feel better then it would be worth it.
So the journey continues, it's not easy, but it could be much worse. I have found a friend in Xanax and I will see how it goes over the next 2 months. We are going on vacation in Nov which may be just what I need to take a break and the best part is I got the ok to take a TKI break while on vacation before I start taking Sprycel. So maybe I will actually have a few days where I can feel somewhat normal.
That's it for now.
Will update as things happen.