Hey All.
My boyfriend has been on Nilotinib since Oct 2018. His PCR test in Sept 2019 showed 0.14 and now in Dec it's showing 0.15. We're waiting for the Lab to let us know if there's T315i mutation. If there is, the doctor suggests to go for a transplant. My friend doesn't want to go for transplant, he would want to try all TKI first. If there is no mutation, doctor wants him to change to Dasitinib. Opinions?
Very early to discuss transplant. Some people on the forum took years literally to reach MMR before guidelines changed. I don't think any experienced Oncologist would change anything unless you had two significant rises in PCR or were above CCyR. Im no doc but can tell you that T315I is not to blame. The PCR would have significant rises if that were the case. This low of CCyR is not bad at a year. It may be a plateau with a drop coming soon.
The last thing you want to do is go for a transplant, some bad doctors suggest that as a money maker. The chance of survival is not that great (80% post transplant and then another 80% on top of that after one year) and that doesn't even include the very real possibilities of GVHD and the fact that CML can come back after a transplant. There are four additional drugs available if one fails (which in his case, it hasn't) and many drug trials before anyone should consider going down the transplant path.
I would consider changing doctors.
Hey. So far this is the only PCR rise. He definitely doesn't want transplant. We're wondering if it would be wise to change to Dasitinib?
Hi David, am hoping that his next result will show MMR too. However, the Doc might suggest that he change to Dasitinib. Would need your opinions on this, I understand you've been on Dasitinib.
Hi Poppy,
Like David said the PCR test isn't that accurate to say that he's had an increase in the PCR score. Consider it a plateau. I had a couple of plateaus and one uptick in my seven year CML journey so far. I changed from imatinib to dasatinib when my PCR score went from 000.039% to 000.233% over a nine month period.
It probably wouldn't hurt to change to dasatinib. Some people think it's good to change once in a while in the hope that the rotation of TKIs will keep those nefarious CML stem cells at bay.
Kirk
I hope the next result does show MMR, but even if it doesn’t if he’s tolerating imatinib well then there’s every argument to say to persist for a while longer on it.
I changed from imatinib to dasatinib. I was responding OK to it, not super but not terrible. But I had very bad side effects from it, which was really the reason I switched.
If his doctor suggests transplants again, I would change doctor rather than change TKI!
David.
He's been on Nilotinib since he got diagnosed last year in Sept 2018. So far he has gotten used to the fasting and fatigue. But the rashes doesn't seem to go away. Yup, definitely will change doctors if the transplant suggestion came up!
The fact his doctor discussed transplant with his current results suggests his doctor is incompetent.
Find another doctor. This one is dangerous.
PCR tests on any one sample can vary 1/2 log up or down. Your boyfriend's results are flat - no change. Quite normal as David pointed out. He could certainly switch drugs (I would) to a low dose dasatinib (i.e. < 50 mg) to test an even quicker response and to hit CML from another attack point. There is evidence CML exposure to multiple drugs (i.e. switching) can lead to deeper response. The idea is simple; dasatinib and nilotinib work differently attacking overlapping clones of CML cells. Switching drugs can hit more of the natural variations in CML.
(I am undetected on 20 mg dasatnib every other day)
I've been on imatinib för 2½ years and this october my pcr went to 0.23% and then 0.4% in november. I got to switch to nilotinib (300mg x 2), my doctor did not suggest anything about a transplant, and did not seem to worried about the rise in pcr (I hope it goes down again, other blood values are perfect).
Hi All,
Would like to give an update, his PCR test came back as 0.05%! However, he chose to switch to Dasatinib due to side effects on Nilotinib.
It's been almost a week on 100mg Dasatinib & the side effects such as acne / muscle & joint pains are still there, but manageable.
How long and what levels of PCR does he have to be on 100 mg Dasatinib till he can suggest to drop dose?
Thanks Everyone!
That's Great News! I have gone the other way (Dasatinib to Nilotinib) and my last result was 0.12 which is very close to what prompted you to start this thread so personally I find this encouraging. Thank you for sharing. There is literature that suggests that 50mg Dasatinib is sometimes more effective so that is something to consider.
Hi All,
Feb - 0.05%
April - 0.1%
My boyfriend has been doing great on Dasatinib 100mg, it's been over a month.
Except for acne problems all over his scalp / body.
However, his PCR came back today, 0.1% & we're quite worried on this increase in 1 log.
In the past, he had done Mutation Testing but it turned out negative.
His next PCR testing will be next month & we're hoping for the best...
I believe that is a half log increase and the upper limit of lab error. It would be interesting to note whether he took any time off between medications while waiting for the next to arrive. This could have affected the numbers and they may come down now that he is getting used to Dasatinib. I had an increase of 0.04 from 0.12 to 0.16 and it does of course make me nervous but I think it will come down again. The 2020 NCCN guidelines have under 1.0 as target met beyond 15 months. Of course we all want 0.1 and below but the truth is that not everyone is the same.
The two most important prognosticators are being below 10.0 at 3 and 6 months and below 1.0 (CCyR) after 12 months.
TFR may not be in the cards for some of us but I am grateful for all of the research and breakthroughs that have happened regarding CML since 1999.
I hope the numbers come down and keep us posted.
Well I think a month may not be long enough to make a determination but if it does turn out that Dasatinib does not work for him I would keep in mind that he reached MMR on Nilotinib and try to find ways/methods to alleviate the side effects and give Nilotinib a second try. Reaching MMR is a GREAT response (I still have not) and nothing to move on from without serious consideration.
IMHO I would 1. Go back to Nilotinib on a second rise on Dasatinib 2. Try Imatinib (works similar to Nilotinib in its approach) since he reached MMR on Nilotinib 3. Try Bosutinib.............and a very distant 4. Ponatinib............................extremely distant and not in the conversation with these numbers 5.SCT.
Hope he reaches an awesome response on next labs.
Hey All,
It's been 2 months since he switched from Nilotinib to Dasatinib 100mg. It's much more tolerable than Nilotinib.
We received his blood results and his platelets had gone down further to 59.
We're waiting for his PCR test now.
Ive read up that Dasatinib might cause platelets to go dangerously low. How long does it take till the platelets move up? Or will it only stabilise when he's off from treatment / drop to a lower dose?
