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Need answers please. Neutropenia on imatinib

Hi, so I’ve been on imatinib for about 3 months now, and my biggest worry is becoming neutropenic and catching an infection. 

ive not been neutropenic as of yet, I believe the lowest my neutrophils dropped to were only 1.6 and that was about a month into treatment but since my neutrophils have stayed between 2.0 and 2.6. 

It’s been causing a great level of anxiety for me as I previously had ALL back in 2017  but with the Ph+ chromosome. And reason I’ve been put on imatinib is because of my BCR ABL ratio increasing. 
 

Question is, when exactly can I stop worrying about neutropenia, how long does it take for the average body to adjust to the medication. 

As you will see from our page on blood counts (https://cmlsupport.org.uk/section/normal-blood-counts) neutropenia is generally only a problem when counts are below 1. Even then, it’s when they are close to zero that thing are actually problematic.

2-2.6 is perfectly OK. I think you can stop worrying about it right now, or actually some time ago.

David.

I think a lot of my anxiety about it all comes from my previous diagnosis as mentioned, as during it I had many complications, such as neutropenia sepsis. 
 

I know the treatment is different, as when I had Ph+ ALL I was on high dose chemo, plus imatinib which was all completed.

Being back on imatinib (in my case to prevent relapse) just causing a lot of lot anxiety of the past. 

Hi

I had a very low WBC for at least 20 years before I was diagnised with CML - WBC then around 2.5, Neutrophils 1 on a good day. That went down to WBC 1.5, neuts lowest 0.4. on 400mg imatinib 15 years ago. Now on 200mg imatinib and WBC around 1.5, neuts around 0.7. I have a stock of broad spectrum ABs from the GP, but most common issue is I realise they have gone out of date when I'm about to go on holiday.

 

Hope that helps

I understand your anxiety given your diagnosis of Ph+ ALL rather than Ph+CML. ALL is not a simple disease to control, but hopefully the high dose chemo drugs did knock out the leukaemia lymphoid population?

Where are you being treated? Could you talk with your doctors about whether it is possible to switch to a second generation TKI such as dasatinib which has shown some efficacy in controlling Ph+ ALL?

https://pubmed.ncbi.nlm.nih.gov/33085860/

Sandy

Hi, so back i 2017 when I had high dose chemo it killed all of the leukemia and had remission the same year, but finished intensive chemo February 2018. Was on maintenance (including imatinib) treatment until about october 2020 (as that’s the protocol for ALL treatment). Had been in remission ever since. 
 

July 2021 my BCR ratio began to rise, but only very sightly so was getting the test done every four weeks to see if it was just a blip, the ratio fluctuated over a few months, but was still rising so in November 2021 I was put on imatinib.

Doctors still unsure on what’s happening as my biopsy showed no signs of Leukemia, so it’s more precautionary being on imatinib. I’m treated at University College London Hospital. 
 

 

OK, I understand that starting you again on imatinib is 'precautionary' but given dasatinib has shown it's activity in acute leukaemia I am surprised that your clinical team has not used that particular TKI even though there is no evidence of activity from your biopsy. 

Do you have access to your PCR results from November and/or earlier, and the current one so you can compare the BCR/Abl %?

Although UCL is an excellent centre you may want to take advantage of an email service called 'Ask the Expert' offered by Imperial College (Centre of excellence for PH+CML, Acute Leukaemia, Stem Cell Transplant etc) see link here from our home page https://cmlsupport.org.uk/asktheexpert

Note* I had a stem cell transplant at Imperial (Hammersmith Hospital) back in 2003 when I was starting to show evidence of molecular relapse after responding to 600mg imatinib for 2.5 years (Ph+ CML in AP). So I might be biased, but .....

Sandy

Hi, sorry for late response 

pcr results are as shown:

16/8/21 - BCR-ABL/ABL Ratio: 0.049%
9/9/21 BCR-ABL/ABL Ratio: 0.088%
7/10/21 BCR-ABL/ABL Ratio: 0.067%
4/11/21 BCR-ABL/ABL Ratio:0.092 %

-IMATINIB 400MG/d started 18/11/22-
24/12/21 BCR-ABL/ABL Ratio: 0.148
20/1/22 BCR-ABL/ABL Ratio: 0.063

I know that I’ll see some fluctuations as I continue to take Imatinib, but consultants are happy for now for me not to change to another TKI.