I hope all of you are having a good early fall season and living well with CML. I just finished a very frustrating and discouraging 18 month follow-up with my hematologist and would be grateful for advice from you all ... at this point, I'm in a position where I need to find some peace and trust in others who have to deal with this chronic disease, and that would be all of us. I appreciate folks giving this a read and sharing your thoughts.
- BMB/A confirmed CP CML in March 2011
- 18 months since starting Gleevec 400mg (100% peripheral blood draws since diagnosis)
- PB FISH: Reached CCyR in ~ 5 months
- PCR: Undetectable @ 1 year, but 3.37 log reduction (International Standard) at 15 months
For the 18 month follow-up today, I did my blood draw almost 2 weeks in advance to make sure I would have PCR results in hand. This has never been a problem in the past, but because of red tape and delays, the results were not available at my appointment this morning. I was very agitated in the appointment, because it's just not that meaningful for me unless I know my PCR result. After the appointment, I just received a callback from the hematologist saying that it was higher but he wasn't concerned and would check again, but I don't have specifics. So I'm in a panic that I've lost response to Gleevec (undetectable, then 3.37 log reduction, now something higher maybe (?)). Within the first two years of treatment, I'm now freaked out. I couldn't get the specifics on the exact ratio from the test, or the log change from IS baseline. Is it 3.00 log reduction, which would be within the margin of error for the test? I don't know - and he wasn't able to share it cause he had to ping the physician who's been sitting on this test for 2 weeks waiting to sign off on it!! So I just got this big-picture result over the phone and a supposedly settling "I'm not concerned, we'll retest in 3 months." from the hematologist. I am not settled at all and am looking forward to a completely miserable and anxiety-ridden weekend.
Although I respect the hematologist and appreciate him making a TKI available for me, I am considering making a doc change in order to work with someone who understands that I'm super detail-oriented and want specific numbers on time, and be able to make sound decisions on the direction of my treatment. I have learned enough from this board to understand the myriad of possible outcomes and I feel informed enough to press for another PCR sooner (6 weeks instead of 3 months), maybe even press for a BMB since I only got one at diagnosis, consider TKI change now or very soon, etc.
In addition, he made it very clear today that he is not interested in PCR test results and is basically only interested in PB FISH test results and maintaining CCyR. He will use PCR as a guide in order to decide if FISH needs to be run; i.e., if I were to dip back into 2.x log reduction, he would run FISH to see if I'm maintaining CCyR.
* If/when I finally get the specifics back, and I find that it's 3.00 log or worse, what would you do? PCRU (not IS yet), to -3.36 log (on IS), and now -3.00 log reduction or maybe worse (on IS). It sure feels like a trend to me, cause the doc said that the sensitivity of their testing machine didn't change when they moved to IS.
* CCyr is what matters, but depth of molecular response is also a factor (I've seen the studies that back it up), and I have been so encouraged to see how much faster folks on Sprycel/Tasigna have responded, so I'm already thinking that I want to make a push toward Sprycel to beat the heck out of this stupid disease. I'm now starting to regret NOT pushing for it as first-line when I was diagnosed. Shame on me.
* So far, I have specifically been visiting this cancer center because they run PCR on-premise, but how important is this really? I mean, don't many thousands of CML patients that have their blood shipped for PCR testing receive results that are meaningful and aren't impacted by blood degredation?
With this situation, would you:
* Just move on with life, stay with the same doc, and wait until your next PCR result in January?
* Switch to one of the renowned, dedicated specialists in the country now (if possible), and get a BMB, etc. to get re-evaluated to see if this is going the right direction, or if there's a problem that needs to be dealt with now? Believe me, I know that BMBs stink, but it gives a doc a lot of good information to see how things are going.
* Switch to a local/reputable onc who is more into the details, stick w/ Gleevec right now, but push for another PCR test immediately for comparison (I would probably only go to a local onc who only uses a PCR testing center that's on IS).
Wearing my emotions on my sleeve today ... I was an avid runner (even on Gleevec, I was running fabulously and felt fantastic) but had an injury that forced me to get ankle surgery back in July, so I'm not running or doing any cardio that typically clears my mind and soul. Not in a good place today.
That said, I feel physically healthy, so there are no physical signs that I can feel that would indicate a major issue.
Thanks in advance to everyone ....