Hello, i was dx in May with a 98% bcr and i take 400mg Imatinib. i saw my consultant yesterday for my first three months bcr results and the response was disappointingly high at 63% . The consultant is talking about switching to dasatinib in December after the next check if there has not been a big improvement. My monthly blood tests are good and i feel fine with virtually no side effects. Has anyone else experienced a slow start like this? Were you switched or maybe have the dose increased? Feeling quite disheartened after feeling sure i was going to get a good result as i feel well and have felt upbeat until yesterday. Thankyou in advance. Jane
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Imatinib 400mg disappointing response
Do you know your FISH level? This is actual measure of CML cells under the microscope and a better indicator of progress than PCR during the initial treatment phase. Also - do you know your blast cell percentage? As long as blast cells are zero to only a few percent, you have time for Imatinib to work. Trend downward is what is key - along with your side effects profile. If you are not feeling any imatinib side effects, you could easily continue as you are doing.
Dasatinib has its own issues and most doctors will prescribe a full 100 mg dose - which recent research is showing is too much. If your doctor is willing to switch you to a 50 mg dasatinib starting dose, dasatinib might be worth considering. It is more potent than imatinib if it is going to work. We're all different in how we respond. Often slow imatinib responders do very well with dasatnib.
(personal note: I was switched from Imatinib to 70 mg dasatinib and 70mg was too much! - I was lowered to 20 mg and remain at that level currently. I am undetected for CML)
Jane - Please don't feel badly about your result - it is SUCH early days!!!! Many, many, MANY people have had that kind of response initially, only to see the next one much lower. And even if they continue to be turtles, eventually they get to the same safe place. Everything Scuba said is valid. It's not too soon to be informed about switching, but way too soon to be disheartened. One thing I would add is this, that a switch to dasatinib would be preferable to wasting time and courting side effects by raising the dose of imatinib. For most people, if imatinib is going to do the job, it will do it at 400 mg. So, for my money, I would take increasing imatinib out of the options pile. Again, MANY times, we see the kind of numbers you have so far turn up at 6 months to be something like 12% or 3% or even 0.6%, that kind of thing. You're on a downward trend, you've only just started, stay the course and don't be sad! You're doing well.
Thankyou so much for your reply Scuba. No i don't know my FISH level, i didn't really know that was a thing to be honest, i'm a bit new to all this and i think should do some more research to ask the right questions!! I do know my blast cells were at 4% on diagnosis but are zero now :) Great to hear you are undetected now that is so encouraging!
Jane there is a lot to take in when you are newly diagnosed. Try using the "About CML" and "Patient Info" tabs across the top - they will lead you to a lot of information, but consume it at a pace which is right for you. Especially there are templates of questions to ask your doctor - and then ask on here if you need more explanation of the answers. In time you will find that your increasing understanding leads you to feel you are more in control. Good to hear that your blasts are not at zero - that's a good milestone to tick off.
I was a slow starter but as it was over 13 years ago I dont have the precise data .It might not be strictly comparable to your case but after year 9 I lost my MMR so in the absence of any new mutations the options were high dose imatinib at 600 mg or nilotinib.After a further two years on imatinib 600 mg the MMR was regained and now this year back on 400 mg and PCRs are near to undetectable.
I would not completely discount high dose imatinib because in some cases it can lead to quite a speedy and deep remission and perhaps crucially if you have no side effects on this drug this is a big plus-are you aware that about 20 percent of those who take dasatinib experience side effects of pleural effusions and some of these patients are forced to discontinue for a while; also having your lungs drained of fluid is not that pleasant a procedure.
It is not used so much as in the past but you might ask your specialist to compute your SOKAL score as I believe it is about age,level of WBC and blasts at diagnosis and was used at one time as a predictive tool in terms of likely response and so on.
Blasts at zero at your early stage is excellent. It suggests Imatinib is likely doing its job and as several people wrote above, many so-called "slow" responders do just fine and end up where most of us end up - PCR below 1.0%.
You are not going to die from CML.
It's unsettling at first, but your trajectory and cell response is very good. Tweaking drugs is always an option to optimize and that is worth consideration. Regarding dasatinib and pleural effusion side effects, this is mostly true on high dose dasatnib (i.e. 100 mg). On low 20 mg, but effective dose, dasatnib pleural effusion is rare.
Keep learning and asking questions. I tell close friends of mine who know I have CML (or maybe I don't??) that it probably saved my life from an early death. Getting CML caused me to focus on overall health and even though CML was successfully treated, I discovered a host of cardiovascular issues during my increased health scans that would get the best of me if I didn't address them - which I did! CML was the least of my problems when that heart scan came back. I tend to focus more on heart, body and mind than I do CML - but you first have to get CML under control - and along the way learn about your body so you can take great care of it.
You are going to be fine.