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anemia en leukopenia with imatinib

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Hi

I am using imatinib since June 2018 and 4 years 600mg instead of 400mg.

Since March 2023 I have mild anemia and leukopenia. In March, my thrombocytes were too low, but they are normal now. My leukocytes are going up again but my hemoglobin is still going down...

My pcr is 0.05 IS. In March, it was no number, but they could guarantee it was in MR4.0.

Is it common to obtain anemia after 5 years of therapy? I also are in the pre phase of DM.

Thanks

I have had low haemoglobin readings since diagnosis. First, I took imatinib, then dasatinib.

My consultants tell me that the TKIs probably caused the low haemoglobin reading, but that is not certain.

I had normal iron, B12 and folate levels early on, and my anaemia was documented as normocytic normochromic.

More recently, I have had low iron readings. I tried oral iron, which did not work, so I was given two iron infusions, bringing my haemoglobin up to a more acceptable level.

My GP marks my blood results as "Abnormal, but expected".

I have diabetes, but it remains well controlled (HbA1c = 6.2%). I do wonder whether the dasatinib has helped to manage my diabetes.

Thanks,

Did you also experience Leukopenia ?

Hi argearge

I don't think that it is common to obtain anaemia after 5 years of therapy, but it happened to me! I had severe anaemia as well as low platelets and leukopenia, to the extent that my doctor thought that my CML had transformed into either blast crisis or another blood condition. I was even being prepared for a bone marrow transplant! However, after a series of tests and a lot of worry, it turned out that it was a side effect of the imatinib that was causing this. You can read my whole experience here:

https://cmlsupport.org.uk/thread/14565/sudden-transformation-mr4-blast-c...

After stopping the imatinib and getting bi-weekly shots of red and white cell growth stimulators, I regained normal blood counts. I'd suggest investigating whether or not it may be a side effect of the imatinib first - my doctor didn't think it was possible for the side effect to happen so many years into treatment, but I am living proof that it can.

Hope this helps!

Best wishes

Martin

Thanks,

Last time my thrombocytes were normal again and my leukocytes were a little higher. So I think, it is going the right way.

Thank you, Scuba, for the link. I am aware of this study. This is a retrospective study rather than a mouse study, so its results are encouraging. I have reduced metformin from 2g a day to 1g a day. If my HbA1c remains on target, I wonder whether I can further reduce metformin.

My leukopenia en anemia have restored, so it is no problem anymore.

BCR-ABL was not measurable in september (detection limit is 0.01 IS)
Yesterday my BCR-ABL was 0.01 IS again.

We are thinking to lower dose somewhere this year, from 600mg to 400mg and lookk what it does.

argearge1, at 600mg you are taking far more Imatinib than you should be. You should reduce your dosage immediately.

Buzz

I have to take this, because my blood levels of imatinib were too low 4 years ago. It has to be > 1000 UG/L. With 400 mg it was around 700 ...

argearge1, the only thing you need to be concerned about is your CML level. A reading of 0.01 indicates that you should have likely reduced your dosage a long time ago. Not sure why your doctor put you on 600mg to start with but he/she should have reduced your dosage at some point along the way (preferably as early as possible).

Buzz

Well, with 400 mg I did not reach an MMR. Constanly just above 0,1. With 600mg I reached 0,01 in june 2022...

argearge1, any CML reading of 1.0 (CCyR), or less, means there is no danger to the CML patient from the diseases. At that point taking a higher then necessary TKI dosage in an effort to reach MMR, or undetectable, is not recommended.

Buzz

I did a 2nd opinion at a CML expert, and he said that I should reach MMR. They want me to change to dasatinib 140 when I did not reach it with 600mg imatinib, but 3 months later I reached it with 600mg imatinib.

argearge1, I have a very low opinion of that CML expert for unnecessarily putting a CML patient at risk to the side-effects of extremely high dosage TKIs in an effort to reach an unneeded MMR. With time, CML levels tend to drift lower, regardless of dosage, and even at the lowest dosage.

Buzz

I do not have side effects, only muscle cramps in my feet.