Hello, I am some worried and anxious after the results of the first 3 months after the diagnosis, (400mg imatinib) I do not know what the exact PCR-ABL percentage is and I prefer not to know it, since it would obsess me even more than I already am, and it is not good for me, due to my unstable mental health, however the doctor told me that they were not very good, but that even so at the moment the change of TKI is not considered, it is very difficult to live like this with constant uncertainty and with fear .. I was diagnosed when I was young (22 years old), with a normal spleen size, no symptoms, and only 20,000 WBC, which I thought were good signs, but apparently it should not necessarily be the case .. I wanted to know So why is a quick response so important? I do not understand why it is worse to reach a good figure at 25 months than at 15 months, for example, I would like to know the relationship between the rapid response and a better prognosis and why, or if, on the contrary, respond slower not necessarily Is it worse in the long run? Thanks for reading, greetings from Spain.
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Slow response imatinib..?
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Hi Jay
I completely understand your worries and concern. And like you in the early days I didn’t want to know anything bad and buried my head in the sand. At diagnosis I didn’t read any literature or come on here until about 3 months after my 1st BCRABL result. All I knew is I had cancer and it didn’t matter what one it was and I convinced myself life was over.
The good thing for you is it’s sounds like you were caught early with such a low wbc. Docs like us to be less than 10% by month 3. Many people come close and some people do not. Remember life span is 3-5 years from diagnosis if you don’t have treatment so you are way way off that being any issue in the immediate term.
I do believe younger people take longer to respond not a fact just a hunch from being on here for a few years now. Some people don’t respond to Imatinib and why we have like 6 drugs now for this very reason. And it’s a good job development didn’t stop once imatinib was made again for the same reason.
1 of 2 things will happen, you’ll no doubt have a dosage increase to 600mg which is probably going to bring it down, or you will switch to a 2nd generation drug. Nilotinib (which I am on), Dasatinib or Bosustinib. These drugs are very powerful at kicking CMLs butt and failing those you have Panotinib and Amisicinb. We have many lifelines and I am sure many or a combination will work.
As hard as it is you really need to know what your presenting PCR was at diagnosis and what you are now. If you were 100% or above and you fell to say 30 or 20% that would still be a decrease not ideal but it might be a case of sit wait it out. I was supposed to reach MMR by 12 months which is <0.1% and it took me 30 months so don’t get too hung up on the timeline. The trend is the most important rather than any one result.
If all that fails which is highly unlikely you’ll have a mutation test to see what’s going on and even then it’s not the end of the road.
This disease especially in the early days keeps you on the seat of your pants and if you let it consumes your whole being. Things get easier when response starts to kick in.
I am sure you’re going to be fine mate. Hang in there.
Al
Hi jay,
Alex is spot on in his reply to your concerns, I was on 200mg of Imatinib when first diagnosed 6 years ago, after 9 months my consultant informed me it had “failed” which I found this term quite frightening, but I was then put on 800mg of Nilotinib which I’m still on, and everything is fine. The thing about Cml is, if you let it, it will give you a lot of sleepless nights through worry, worry isn’t a medication, the disease doesn’t get a mention in this house.
stay safe,
peter
Every body is different, you are getting better and that's what matters.
I had a sub optimal response on 400mg imatanib at 3 months, but continued to have a very quick TMR time. And i had more than 10 times your wbc at diagnosis.
I can understand it's a concerning time but you cant control it, so why worry?
Ive gone on to live in 3 countries on 2 continents since my diagnosis (including spain). I dont feel my CML restricts me in any way.
If you can, try to focus on what comes after, not on where you are now. There are really no norms on any of this. Work hard on acceptance of things you cant change.