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Why am I so slow...

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Hi all,

I just found out my latest bcr-abl results and I’m really disappointed to say the least. 
Did any of you experience (somewhat) the same journey...and will it be all right in the end? I’m kind of freaking out now. I mean it’s descending but reaaally slow right (too slow??)

Fortunately for my sanity I see my hematologist tomorrow, but I was just wondering if some of you have any advice on what should be done next or experience that you want to share?

My timeline:

21-07-20    Dx (bcr-abl unknown/ not measured)
23-07-20    Start Imatinib 400 mg
26-10-20    72.9% bcr-abl IS
16-11-20    68% 
02-12-20    Switch to Dasatinib 100 mg (no mutations, Sanger sequencing)
22-12-20    29.4% 
04-01-21    23.8% 
18-01-21    15%
24-02-21    11%

(Just one sidenote: NGS for mutation testing is not available here in the Netherlands and I’m already treated now by one of the best CML experts in the country). 

Hope someone has some advice on this...thank you,
Marilyn

Marilyn, you are at 7 months; testing less may help to lower your anxiety; every three months is normal.  Some CML patients are slower than others.  

Wishing you the best,
Buzz

 

Hi Marilyn,you say you are being treated by one of the best CML experts in the country ,but I am not sure you are .You started Imatinib in July with numbers going down then in only December he changed your TKI to Dasatinib at 100 mg .He didn't really give Imatinib a chance to work really did he ,and why are you testing so often every three months is what we do in the UK .100 mg is very high ,less is more with Dasatinib  and you might actually do better on a lower dose and feel much better too .Sounds like he is in too much of a hurry to get your numbers down ,we are all different and go at different speeds .There is no hurry as long as the trend is down .I changed from Imatinib at 12 months cos it was slowing down and moved on to 50 mg Dasatinib no way would I take 100 mg .My doctor didn't agree but it worked for me .Good Luck ,Denise.

Hi, thank you Denise and Buzz for responding so quickly. 
You’re absolutely right that I’ve been tested a bit too often, but that’s partially because I switched doctors at my request. (And partially because of some mistakes at my first hospital). 

I had a low Imatinib through level and my first doctor gave me a higher dose of 600 mg after I had my 2nd ‘warning’ response of 68%. But I didn’t have a lot of faith in my 1st doctor (several reasons, one of them him being ultra-conservative) so I asked for a 2nd opinion. My 2nd ‘expert’ doctor wanted me to switch to Dasatinib, as I did too. Mainly because of everything I’ve read about better responses of 2nd gen tki’s with patients with high Sokal/ high Elts scores (which I have). So the switching is definitely also my ‘fault’ because I pressured really hard at my 1st doctors office. My current doctor confirmed what I’d read, that with high sokal/elts scores he’d prefer to start with Dasatinib. Had I come to him from the start he’d put me on 50 mg but now that I already had a warning/failure response he wanted me on 100 mg. 

So I think I’m a bit impatient myself I guess. But if it is just that, I’m being impatient then I’ll definitely will change that. I just hope this isn’t a plateau or something, and I just want to be (fast!) under the 1%. Lower is obviously better but as I understood, under 1% then I would be basically out of the ‘danger’ zone and would have far less risk of progressing. But you’re right, as long as the trend is down (and no blasts I read) then I should not be in a hurry. I’m going to try that:)
thanks again for your responses,
regards, Marilyn

It looks like you are just past 6 months and at 11%.  I believe the target is under 10% at least by six months.  That being said I don't think Dasatinib has made it's full effect yet and you are close to reaching the first target.  I would wait for next result on Dasatinib (3 more months) to see if the trend continues.  I would not be surprised if you are close to, or under 1.0% after 3-4 months on Dasatinib.  Hang in there.   

Thank you for your advice. That’s exactly what my dr said as well, that he wants to await the next results. And that’s it is not a lineair line but that it moves in sort of a ‘wave pattern’ down. 

Next test he will look at my through level of Dasatinib as well. If that’s too low, he probably wants to increase my dose (which I hope is really not necessary, from reading all about here on the forum). 
 

Hi

There are quite a few people who have stuck on a plateau of BCR-ABL results for 6-9 months and then it has suddenly dropped. In my case I was around 0.6% from about 9 months post diagnosis to 18 months. Then for no good reason I could see, 0.04%. Hope you have the same experience. I was on imatinib but I have seen people experience this with the other TKIs as well.

Evening,

I was a slow responder to treatment. Started on Imatinib which caused me all sorted of issues. I changed to Dasatinib which was working but never got me into MMR and then developed a mutation which took me to Nilotinib. 2 1/2 years later I achieved MMR.

So my advice would be to not worry too much about MMR right now. These things take time. But rest assured on your progress levels have been very good so far.