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Anyone else have EXTREME brain fog with dasatinib or imatinib?

Posted by divermom @divermom, May 5 12:02pm

My husband was just diagnosed in December with CML. He has also had Polycythemia Vera for 25 years, managed well with medication, most recently Jakafi until this CML diagnosis.

He was started on Dasatinib 100 mg, but he reacted with more than brain fog, more like dementia-level reaction. From making wiring diagrams to "what do I do with this medicine pack"? Dr took him off for a week, and the veil lifted. Switched him to Imatinib 400 mg, but we are seeing the same reaction.

It is a known but rare reaction to the TKIs, and we're meeting with his hem/onc again tomorrow to work on it. I'm wondering if anyone else has battled this. My dear engineer husband thought the initial itching was awful until this happened.

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Moderator
Colleen Young, Connect Director | @colleenyoung | May 17 4:30pm

@divermom, it must be so disconcerting to see these cognitive changes in your husband who is the problem solving engineer.

I'm tagging fellow CML members like @living @dmmurph @bobmon @ortina2023 @craighatescancer @quita123 @pam62 @suzie71 @ericloomis @kimmy5 @talmadge81 @riteshkundu, who have experience with dasatinib (Sprycel) or imatinib (Gleevec) and who may be able to share more.

How did the appointment go with the hematologist? Any changes to treatment?

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1 reply
ortina2023 | @ortina2023 | May 17 5:14pm
In reply to @colleenyoung "@divermom, it must be so disconcerting to see these cognitive changes in your husband who is..." + (show)
@colleenyoung

@divermom, it must be so disconcerting to see these cognitive changes in your husband who is the problem solving engineer.

I'm tagging fellow CML members like @living @dmmurph @bobmon @ortina2023 @craighatescancer @quita123 @pam62 @suzie71 @ericloomis @kimmy5 @talmadge81 @riteshkundu, who have experience with dasatinib (Sprycel) or imatinib (Gleevec) and who may be able to share more.

How did the appointment go with the hematologist? Any changes to treatment?

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It’s hard to witness cognitive issues in your spouse. I’m so sorry. Mine has Normal Pressure Hydrocephalus (NPH) which causes dementia, so I can sympathize with what you’re experiencing.
I am taking nilotinib (Tasigna) 300 mg twice a day as required as a participant in a clinical trial for newly diagnosed CML patients. I have been taking Tasigna now for 18 months with a few minor side effects, but brain fog not one of them. The Tasigna is working well for me.

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craighatescancer | @craighatescancer | May 17 6:56pm

Don’t believe I’ve had any cognitive issues while on Imatinib (or Gleevec) although I don’t have a spouse that might say otherwise. Have been on it since early 2020 and have tolerated it pretty well so far with good results.

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