hi, All, I had some ups and downs recently, just wondering if anyone had similar situations can help me with my questions. I was dx about 9 months ago with a bcr level of 426% (don't know why it is over 100%). Then i was given Glivec treatment, after 3 months, bcr is down to 37%, after 6 months, bcr is down to 0.74%. I was actually happy about my result. but my doctor wasn't, he thought it should be at least 0.1% by 6 months. Failure to reach 0.1% means imatinib is not optimal for me. So he switched me to Dasatinib. That's when the trouble started, after just 3 weeks, I started to have heart pounding problem, especially at night, I could not have a good night of sleep, always feeling tired during the day, always feel irregular heart beats, even bending down to tie my shoe makes my chest ache. We had a bcr test done at 7 and half month (first 2 weeks still on imatinib because of the waiting period), it was down to 0.33% (i suspect that most of drop might be done in the first two weeks), and another bcr at 9 and hallf months, but this time was 0.25%, not much difference from the previous one. During the time, I had to stop for a week because of the intense heart problem. When the 9 and half months result came out, I really think that Dasatinib is not working that well for me and it gives me so much of trouble that I can not function normally. My doctor thinks it is normal that bcr level is not dropping quickly at this stage, and I should continue to take Dasatinib. But I am not convinced, I insisted to be put back on Glivic. I really couldn't understand why he switched me to dasatinib in the first place, when my bcr level was dropping so quickly. and when my bcr level is dropping slowly, he insisted to continue dasatinib. Do we have to reach 0.1% at 6 months time, I am no expert. Now I am back on Imatinib, the heart pounding problem has improved a lot, but there is still irregular beats now and then. Not sure if dasatinib has done damage to my heart permenantly. And I dont know if imatinib will still work or not. I've heard cases of imatinib resistance. Hope fellow cmlers can help clear my doubts. Thanks so much, William
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Hi William,
I'm glad you are back on imatinib after having trouble with dasatinib if that is making you feel better and is working for you. Incidentally, I had loads of trouble with imatinib and have settled well on dasatnib. Horses for courses!
Anyway, Leukaemia Net define greater than 0.1% after 1 year of treatment as a "warning". Below that and it's a very good response. It's not a 6 month recommendation, it's a 1 year one.
There is some suggestions from a study by Marin, et al in London that getting to 10% at 3 months is a good indicator of how well the treatment is working. It's by no means a hard and fast rule, though.
Looking back at my own history, I was diagnosed at over 320% and after 3 months I was at 41%, so well above that 10% recommendation. I switched to dasatinib for other reasons, and after 6 months I was at 0.536%. At 12 months, I was down to just under 0.4%. Again, above the Leukaemia Net recommendations, but the trend was lowering so we persisted with the treatment schedule for a bit longer. After two years, I was down to 0.05%, and after two and a half year, down to 0.02%. I await the next result next week and am hoping for another drop, but it's all going well now.
I guess the moral of my story is that guidelines are important, but so is the overall trend of repose to treatment.
I hope some of that helps,
David.
Thanks David, I guess symptons and side effects varies from one to the other. Heart pumping is the main reason for me to switch back to Imatinib. And with Imatinib, I don't really have too much of issue other than occational stomach upset. I think if i am going to take something lifetime, it should be something affect my life the least. Anyway, the next bcr will be tell if imatinib is still working or not. Thanks for sharing your experience.
William
Hi William,
sorry to read of your experience.... especially as you were responding well to imatinib... as David has said in his post - ELNet recommendations are for 12 months not 6, and even then a less than optimal response should be treated as a 'warning' not necessarily a reason to rush to change therapy. NCCN 'guidelines' more or less concur with ELNet. It is a shame that your doctor was so gung-ho for a change of TKI- especially as you were happy with imatinib. Don't worry too much about the possibility of not re-responding to imatinib, unless there is evidence of resistant clones in your tests. The fact that you had a very good response indicates that you are still very likely to respond.
I sincerely hope that your cardiac symptoms will be fully resolved over the coming weeks and months. It is highly likely that your Bcr-Abl percentages will continue to drop steadily as before. Guidelines and recommendations are just exactly what they say they are- guidelines and recommendations. To treat everyone as if they are exactly the same is a misunderstanding of how we as humans are- similar to each other in many ways- but also individuals in how we respond, especially when we are considering therapy that works on a molecular level. Have faith in your decision to resume treatment with imatinib.
Sandy
Hi William,
I am not 100% sure on the time it takes for dasatinib to completely wash out of your system, but when I dropped imatinib my consultant and I calculated the half lives of the drug, and reckoned it took around 10 days to 2 weeks for only a tiny residual amount to remain.
The reason we did that is because we wanted to know if my issue was caused by imatinib. The thinking was that it the issue persisted more than 10 days to 2 weeks, it may not have been down to it. As it happened, it took about 7 or 8 days and my issue completely disappeared.
David.