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Diet effect on neutropenia (coffee, supplements)

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Hi All,

I was diagnosed 10 months ago and am on my 2nd TKI (dasatinib first, now nilotinib). Both have given me neutropenia which has really limited how low they can drive my bcr abl %. I have a few questions about diet, wondering if anyone has any info or personal experience to offer:

1) Any coffee or caffeine effect on neutropenia?
I am a coffee lover. I have cut back since diagnosis, but I still have a medium sized mug in the morning daily.

2) Any dietary changes you've made that seem to help with neutropenia or treatment in general?
I eat lots of vegetables, fruit, kale, turmeric, etc. Doesn't seem to matter.

3) Any supplements you take in addition to the TKIs?
So far I have listened to my doctors and not taken anything. My mom believes circumin, green tea EGCG extract, glutathione, and vitamin c can all cure leukemia.

4) There are a ton of naturopathy or alternative medicines out there for "curing cancer" (see above). Anyone ever consider abandoning the conventional forms of treatment? Personally this seems like a terrible idea to me.

Really appreciate you reading this and any responses you can offer.

Kevin A

Hi Kevin,

Welcome to the Forum ...

I had severe neutropenia - dangerous in fact. My neutrophils fell to 0.1 (dangerous is anything below 0.4). I was on Dasatinib (Sprycel) when severe myelosuppression occurred, but my doctor opted me not to switch drugs. Instead he told me a series of drug breaks will get me through the transition. He mentioned that such a reaction could be a good sign suggesting I am "sensitive" to the drug and that CML cells are taking a big hit. Mostly it is a reaction to the fact that leukemic cells made up a large portion of your blood white cells and when suddenly destroyed a 'hole' was left. My doctors' approach was to have me go through a series of drug interruptions to allow my normal hematopoietic blood system to recover from the leukemic one. It took seven months and 3 long term drug breaks, but slowly - each myelosuppression was less severe until I was able to maintain a very low, but acceptable neutrophil count. Slowly it recovered.

The good news for me was that I was re-started on 20 mg Dasatinib. I am still on 20 mg. Dasatinib and I am PCRU (i.e. "undetected"). I never needed full dose.

Chances are for those who experience myelosuppression as you did - do not need full dose of "TKI" in order to get a therapeutic response.

Next year, I go off Dasatinib completely and test (for the second time) - treatment free remission.