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Low Neutrophils..off Imatinib...rising BCR

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My neutrophils have gotten lower than the doctors like, took me off Imatinib for a few weeks.My WBC and neutrophils have been below for 2 weeks prior to being off the meds. Red Blood Cells Count, Hemoglobin are holding steady. The Real concern was the WBC and neutrophils.

BCR has gone up since then, has anyone had this happen? BCR has been falling since I've been on Imatinib since October of 2020.

Are any of the new generations better to keep CML in check and not be overally harsh regarding neturophils and WBC?

Any advice will help!

Hi,

Do you know what your WBC and neutrophils were before you had CML? Prior to my diagnosis, I had been investigated twice for low WBC, and they had concluded I was just the person with the lowest counts, but was fine - I have no significant issues with infections. When I started imatinib (in 2007!) counts went down which worried them, but I've still been fine. Pre CML my WBC was typically about 2.5, and neuts 0.8-1.0. I now operate at around WBC 1.8, neuts 0.6-0.8. There is research evidence to show that if you have long-standing low counts they still work effectively. Hope that helps.

Need more information:

When were you diagnosed?

What are your Neutrophil counts currently? At what level did they stop treatment?

I was diagnosed in October of 2020. I have been on Imatinib since then. my neutrophils Absolute is .4 (standard is 2-7 K/ul). my neutrophils -Rel (DIFF) is 21.0 % ( standard is 35-75 %)

I cant remember the level they stopped treatment, they did a lower dose for two weeks to see if that helped bring the neutrophils back up, it did not, so they have me off imatinib completely for now. WBC went up last week to a 2.6 now dropped to a 2. Hemoglobin has been hovering in the 12s for a few weeks and RBC have been around 3.5 to around 3.8 the last month.

Just wondering if this is normal to have a reaction to Imatinib that causes low neutrophils.

Thanks!

I honestly have no idea, I was really bad before getting diagnosed about going to the DR.

I have wondered if chemo or meds is causing low WBC and Neutrophils, does that still put you in a higher risk for infection more so than an untreated issue?

I went through what  you are going through currently - both when I was on imatinib (which ultimately failed to work for me) and later dasatinib.

My neutrophils went as low as 0.1 - which is dangerous. I was told to go immediately to the hospital if I developed any fever whatsoever. At 0.1, you can die from what would otherwise be a routine infection. This is why it is very important to have weekly CBC blood tests during early phase of TKI treatment until blood counts stabilize.

What is happening is your leukemic blood system (which is working, just poorly when in chronic phase) is being replaced with new normal blood. Imatinib is killing off the CML cells and leaving a void sort of speak for normal hematopoiesis to re-populate your neutrophils. Couple this with the fact that most TKI's will also suppress normal WBC production to a degree and you have dropping neutrophil counts.

Your doctor is doing the correct protocol by stopping treatment and letting your blood system recover. This also allows your leukemic system to recover somewhat as well, but with each successive re-start of therapy and stopping, your normal blood will get the upper hand and the leukemic system will get wiped out (except for quiescent leukemic stem cells).

It took me 4 stop/start cycles before my low neutrophil count stabilized and started to rise up to normal while remaining on my TKI (dasatinib).

There is a paper (I would have to find again) describing statistically those who suffer myelosuppression with imatinib will also suffer myelosuppression with dasatinib, but will have a much deeper response overall and with a much lower dose. If you are switched to dasatinib, consider re-starting on a very low dose (20 mg) and track your response. This happened with me. I re-started on 20 mg dasatinib and within a year or so achieved PCRU and am now drug free (TFR).

You'll get there. Be vigilant and ask lots of questions.

What was the duration of the time you were kept off? The numbers I gave you were as of yesterday mornings blood results.

Thanks!

I was off for over three months - but by then I was taking Curcumin in high doses.

Hi, I was diagnosed November 2019. Optimal initial response to imatinib but then within 5 months, my neutrophils had dropped to 0.8. It was March 2020, so peak Covid time and my haematologist was very concerned.  I was taken off imatinib for 2 weeks, then started again on reduced dose. My Neutrophils rose but never above 2.00. Unfortunately my BCR/ABL started to increase again and within 6 months of diagnosis had gone back up to 13%. I was then put on nilotinib last Summer and had achieved MMR by December. My neutrophils now fluctuate between 1.00 and 2.00 but the doctors seem happy with that. No side effects from nilotinib. I realise that pre-CML my WBC were never within the normal range, always around 3, and my neutrophils were also on the low side. 

Hi Sally

 

Just out of curiosity, at what dose were you started on nilotinib? I pretty much have the same situation with you and I am currently on 200 mg twice a day nilotinib. My platelets have now recovered to normal values but neutrophils still hover between 0,5 and 0,6. I am close to 6 months into treatment (6 month PCR coming up in the middle of June). I was borderline optimal/suboptimal on imatinib at 3 months.

 

Timo