So I get on from time to time just to check and see if anything is new, I haven't left a comment in ages, but just like keeping up with what is new. So I wanted to get any opinions/experiences with something that has happened to me. I was diagnosed 2 1/2 years ago, started on Sprycel. It worked well with bringing down my BCR-abl but I didn't do well with some of the side effects (bleeding and fluid in my lungs) and was changed to Tasigna 150mg 2 times a day. We even tried lowering the dose of Sprycel, but it did not work, I still had the bleeding problems. I have been on Tasigna for approx 1 year, last November my BCR-abl was 0.000. This was the first time it had been to 0 and I was very glad. Last week I received my new BCR-abl and it was 0.117. I am completely freaked out. My onc said that, "everyone's (meaning CML pts) was up this week" and my BCR-abl did go up. He said that it wasn't time to panic (easy for him to say), he did not want to make a change based on one result. He said we would check again in 3 months (feels like forever) and see where we stand since my WBC was ok (10.9......usually is between 8-10.5) and I did not have any new symptoms/feeling well, etc. My numbers have consistenly, althoughly slowly at times gone down. This is the first time it has gone up. He did mention that maybe there was something to all his patients that week having their numbers increase, and just wanted to check again before changing medication and test for mutations. I am so worried and upset. I realize the BCR-abl can vary some, is this something someone else has experienced? I just don't know what to think, and don't want to panic or loose hope.
any response would be appreciated....
Posted 22 February 2014 - 11:21 PM
None of us ever likes to see the numbers go up. When the doctor comments that multiple patients had increases in the same week, it smacks of a change in the lab. Going to IS is one example. I hope your numbers are better when it all sorts out, the uncertainty is one of the most stressful part of this disease.
Posted 23 February 2014 - 01:15 AM
I'd be asking to be retested now - if it's a lab error this is a reasonable request (including a $0 out of pocket), if it's not a lab error this this is a very reasonable request.
Dx Dec 2010 @37
2x IVF egg collection
Glivec 600 & 800mg
PCRU March 2012
Unsuccessful pregnancy attempt - relapsed, 3 months interferon (intron A), bad side effects from interferon
Nilotinib 600mg Oct 2012
PCRU April 2013, 2 years MR4.5 mostly PCRU with a few blips
April 2015 stopped again for pregnancy attempt (donor egg), pregnant first transfer, 0.110 at 10wks, 2.1 at 14wks, 4.2 at 16wks, started interferon, slow dose increase to 25MIU per wk, at full dose PCR< 1 for remainder of pregnancy
Healthy baby girl Jan 2016, breastfed one month
Nilotinib 600mg Feb 2016
MMR May 2016
PCRU Feb 2017
Posted 23 February 2014 - 10:03 AM
I also would wonder about changes in the lab such as using a different one or the lab changing equipment or reagents. Another possibility is that the previous PCRU was the error -- no one likes to think of a PCRU result as an error, but it is more likely an error than any other result since it can be due to lab errors or aged sample. Also, you are on lower dosage Tasigna so maybe the dosage is not enough to keep you PCRU. At any rate, the Onc's recommendation is appropriate to wait and repeat, but I would suggest waiting just a month or two instead of three. Overall your levels are low, so no reason to be overly concerned about this one test result, even though anyone would be disconcerted in the same situation.
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