Hi guys , I’ve been a silent user of this forum for a few years now , probably more than I think . I have had CML since 2012 , I am taking Bosulif 500mg per day . My results over the last 9 months have gone up 3 times in a row. My doc keeps telling me not to worry and it’s a moderate change but it’s easier said than done . My %bcr abl1/abl last 6 readings have been ; 0.026-0.023-0.013-0.015-o.027 and the latest one 0.042 . My doc is saying she will higher the dose to 600 if it goes above 0.1 . Should I be worried with these increases ? My 0.026 result was on the 18th of feb 2022 - I get results every 3 months . My latest one which I got today is from the 17th of may 2023 . I generally try and forget I have CML , take the tablet and kick on but as I said I’m starting to get a bit worried . Just looking for some feed back . Thanks . And hope everyone is well
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Results have gone up 3 times in a row
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Statistically, your results are well within the 'noise' of the bcr-abl PCR test. Any result < 0.1 indicates very deep remission with minimal residual disease. Your doctor is reasonable in not being concerned. But your apprehension is also reasonable. After 10 years of treatment, it would be nice to see CML burn itself out. It isn't. It is "smoldering" and could be nothing or a new 'weaker' clone more resistant to bssulif emerging. It is just as likely your bcr-abl will drop down again next test. I assume your blast cell counts are very low or zero.
In addition to taking bosulif, what else are you doing (supplements) to help your immune system fight CML?
For example, do you take vitamin D(3) and test your D levels? Do you take vitamin C, zinc, selenium? (other?)
Assuming you have not modified your lifestyle to favor your immune health and added supplements; doing so would be a good next step. If you are supplementing (as discussed in this forum over the years), then changing drugs (low dose) might help attack smoldering bcr-abl which bosulif is not doing as well.
I was also diagnosed in 2012 and have had similar variations in BCR/ABL1 reports. In 2015 I tried reducing from 400mg to 200mg imatinib and then for a couple of years my numbers were very similar to yours. They started to slowly go up when the pharmacy switched to generic and then they got up to 0.233% after 9 months of the generic. My doc started me on 100mg Sprycel and my numbers went back down but I couldn't tolerate Sprycel so went back to imatinib.
Am I understanding correctly that you don't get your PCR result until three months after the test? My clinic has an online resource where I can check my results a few days after they're reported to the doctor.
Thanks for the reply . It’s kind of reassuring . I don’t take any supplements , I just try and live clean , I use to smoke cigarettes and marijuana , I was never a big drinker . I now do none of those things which made me feel like I was doing my bit to help my body . Im going to look into my Vitamin D levels , I don’t know anything about it but im sure Google will tell me . Thanks again for the reply and advice
Hello . :) 2012 was the year. . I remember the olympics being on when I just found out. Wondering what would be , my son was 2 years old , very worrying time . What are your results like now ? The hospital which I go has the machine to get the results. Before that it use to get sent to the Hammersmith(if I remember correctly) in London . Yes , I did mention to the doc that waiting 3 months seemed a bit crazy . I was happy doing that while the results were going in the right direction but now I’m more eager . I’ve been told I can call my docs secretary in 3 weeks , so I’m going to call in 2 . Thanks for the reply , hope you are well