How long has it taken people to reach this target?
My friend was diagnosed April 2016 and started on imatinib. In the Nov was told was it wasn't working well enough and switched to nilotinib jan 2017
He had to stop that later that year as his liver began failing.
Now on dasatinib he seems to be doing ok and now his bcr-abl result this week was 0 9 from 1.9 ,3 months previously. But has been told it's not quick enough.
Any insight to other people's experiences would be grateful.
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Bcr-abl results <.01%
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Hey!
I recently started dasatinibg (September), and in November I was told my bcr-abl results reached >0.2% un two months. That it usually takes a year and that my results were almost miraculous. Gleevec did not do me this courtesy, it took a few weeks to even see any changes.
I think people probably react differently.
It took me over five years to get to that level. My doctor was concerned when I didn't reach 0.1% after one year of treatment. But my BCR-ABL level has been a mostly downward trend since diagnosis. I switched to dasatinib this year after an uptick, and it seems to have reduced the BCR-ABL even more.
CML is usually a slow disease. I hope your friend remains healthy. Do you know what dosage he is taking? It's counterintuitive, but research is showing that for many of those with CML, lower doses of dasatinib can achieve better overall results than the manufacturer's currently recommended 100 mg/day starting dose. Lower dosages can reduce the chances of problematic side effects and increase the chances of uninterrupted treatment.
Here's my CML history:
09/2012 p210 transcript 118.7% IS @ Dx, t(9;22) translocation in all 20 of the metaphases examined, FISH - 93%, begin Gleevec 400mg/day
12/2012 - 003.59% & bone marrow biopsy - no residual myeloproliferative features but detected 1/20 metaphases containing the Philadelphia chromosome, FISH - 5.5%
2013 - 000.914%, 000.434%, 000.412% 10/2013 000.360% & bone marrow biopsy - normal male karyotype with no evidence of a clonal cytogenetic abnormality
2014 - 000.174%, 000.088%, 000.064%
2015 - 000.049%, decrease to Gleevec 200mg/day, 000.035%, 000.061%, 000.028%
2016 - 000.041%, 000.039%, 000.025%
2017 - 000.029%, 000.039%, switched to generic imatinib 200mg/day, 000.070%, 000.088%
2018 - 000.233%, switched to dasatinib 100mg/day - I want zero #4 back! 100 and 50 mg/day Dasatinib did not agree with me so I went back to imatinib 300mg/day. 000.013% The dasatinib did seem to be effective. It was probably just too high of a dose. Lowered dose of dasatinib, hopefully that will be effective. 000.007% Dasatinib at 25 mg/day seems to working!
He has been on 100mg of dasatinib for 9 months. In that time his results have been 3.6, 1.3, 1.9 and 0.9
Took me about 2 years on Sprycel to get a consistent .0something. Took a year or two more to get to <0.01.
NCCN guidelines say you should reach 0.1% by 12 months. I reached it in 90 days and hit .006% in 6 months, so I was a very fast responder and was able to reduce dose 3 times during the first 9 months. Your friend's recent trend is good and he should not be told that it isn't good, suboptimal but not bad yet. If next PCR continues down then it will be good. If he's on 100 mg of Sprycel, lower dose might be more effective. He should have that discussion with his oncologist as well.