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Anyone else have EXTREME brain fog with dasatinib or imatinib?
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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@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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2 ReactionsIt’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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4 ReactionsDon’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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3 ReactionsI'm sorry you and yours are having to deal with dementia. So difficult on both. My husband just started Tasigna last night after being off of TKIs for a month. Dr started him at just 1/4 dose to start. Hoping this one will go well!
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1 ReactionWishing for the best! I had some skin issues like rash and dryness, and hair thinning, but all in all find it very tolerable. We all respond differently so he may not have any issues at all. I’ll keep him in my thoughts.
Good morning, @divermom. I wanted to follow-up to see how your husband is doing. Seeing him going through such a rapid mental change with those medications had to be so frightening for both of you. Was his doctor able to come up with an alternative treatment plan?
I’ve had CML for 2 1/2 years and was on Sprycel until about month ago. In the first months of this year I was hospitalized three times with pneumonia. They believed the Sprycel was causing this because of low immunity. Other than that I tolerated Sprycel very well. I believe my CML was caused by radiation exposure.
I’m so sorry for your husband’s reaction to dasatinib.
I started on 100mg/day imatinib, but it quickly stopped working. I was switched to dasatinib 100mg/day, but the fluid retention was too much. Also a lot of cramping & rash. My oncologist switched me to 50mg/day and I’ve been on it for almost 3 years now. Minimal side effects and it’s keeping my numbers down! My stamina is lower, I have a slight rash, and I take an occasional diuretic for the fluid retention. But it doesn’t really hold me back from living normally.
I hope your husband is able to find a medication & dose that allows him to think again!
I am very sympathetic. I started on dasatanib in January, 2023; have been taking it for about 18 months. The brain fog has been severe. I don't like talking with people; it's too much effort. I've been a software developer and simply can't continue. My dose was decreased from 100mg daily to 50mg to try to address the problem. I just today asked AI if the brain needs the tyrosine kinase protein to function. Claude.AI: "Yes, tyrosine kinase proteins are crucial for brain function. They regulate development, communication between neurons, learning, memory, and resilience to damage. Both too little and too much tyrosine kinase activity can lead to serious brain dysfunction." So a tyrosine kinase inhibitor causes problems. Claude went on to say that dasatanib crosses the blood/brain barrier so it is particularly problematic; other TKIs are not so bad because they can't as easily cross the barrier. I am meeting with my oncologist soon and will ask to switch to another.
This is from AI, so take it with a grain of salt:
If Sprycel is affecting your cognitive function too severely, your doctor might consider other TKIs, depending on your condition:
Alternative TKI Notes
Imatinib (Gleevec) Older, often better tolerated
Nilotinib (Tasigna) Potent, but can have its own side effects
Bosutinib (Bosulif) Sometimes used when others aren't tolerated
Asciminib (Scemblix) A newer option with a different mechanism
For all it's worth, my heart goes out to you & I understand. It's a strange form of losing ones self.