Hi, Mom (76 years old) has been taking Tasigna (300 mg per day) for 8 months (along with a number of other unrelated meds for thyroid, blood pressure and such). The main side effects she has are flulike symptoms, not feeling generally well, feeling drugged, and food having no taste (so she eats very small portions like a child). She's been having some presumably dementia-related problems for years, because dad mentioned it to me before she passed. I can see a progression but since she's been on the T, it is noticeably progressing at a faster rate. Does T give you 'chemo brain?" She is almost in remission; what would happen if we took her off it? Thank you
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Can Tasigna be hastening mom's dementia?
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Hi, I am sorry your mother is having to battle CML as well as dementia. It is not easy for you I am sure. However, I do not know of and TKi -including nilotinib (Tasigna) causing progression of dementia symptoms. If you recommend she stops taking nilotinib then it is very likely that she will see a return of higher levels of Ph+ cells and her CML will undoubtedly progress. Not many people are lucky enough to be able to maintain a molecular remission without daily TKi therapy.... remission does not mean that CML is cured.
I hope your mother can find other ways to counter the side effects of therapy, which may be causing her to feel less than well. It may be that her other medications - like for thyroid etc- could be 'tweaked' as they may well be a cause of her lessening quality of life.
Sandy
Thank you Sandy,
Maybt. She is significantly more drugged on it - for instance, she used to get a second wind around 11 at night and have all this energy, and that has stopped (Which actually helps me sleep because she is no longer rearranging the kitchen drawer at 2 am). She is drugged when she gets up in the morning. This is a result of the T as her other meds are the same - except that she did increase her blood pressure medicine slightly because the T was throwing it out of whack.
There was definitely a progression in place before, but Im wondering if the fact that she is drugged is taking away whatever other ability to think she might have had.
Perhaps it's not the T. There are some measurable differences in drugged-ness though. Does anyone else experience that or has anyone had a cognitive decline? Just curious.
I don't want her to not take the med, certainly not to have a resurgence of leukemia. If this is an issue I do wonder about the quality of life angle of it. She is 77.
I'm thinking "coincidence". A most unfortunate coincidence. I really feel for you having to cope with your mum's dementia. The thing is with dementia that it's somewhat unpredictable and progression varies hugely and I'd lay money on that her symptoms are dementia rather than nilotinib.
I would suggest though that you may want to talk to others who are on the drug and see if there's anything that can help in terms of things like flexing the times the medication is taken etc.
For instance I take my medication at 4am and have a sleep a couple of hours before I get up and then again at bedtime. That way it doesn't matter if I'm whacked!
Sense of taste can be a tricky one. I went through a phase where I only wanted stuff that was highly seasoned and then couldn't stand anything unless it was bland and then more or less lost all sense of taste and all sense of smell 15 years or so ago.
I'm now on a clinical trial to reduce drug doseage and amazingly my sense of smell and taste are just beginning to come back.
Sense of taste though is different to "appetite". If her appetite is small and she's only eating tiny portions then you could do some other stuff to help her get a large amount of calories in with just small bits of food. Again I had to do this when I was at my most critically ill - on the old chemo and VERY sick, severely ulcerated and painful gastric tract and also with a spleen enlarged to more or less fill the space where my stomach should be! I used to use a product called maxijul - odourless and flavourless and dissolvable. I had a couple of teaspoons of it in my tea. In tiny portions of scrambled egg. stirred in tiny yogurts, in gravy etc etc. My wife used to buy whole milk and then mix in maxijul or else St Ival 5 pints milk powder to it. It basically boosted the milk so it had twice as many calories for the same volume. She'd use that to make tiny little milk jellies and for things like omlettes or scrambled eggs and home made ice cream. At that time our fridge used to be full of tiny little really high calorie stuff... think opposite of a diet! ;)
All the best and I hope you can find ways to work through some things that might help your mum and you cope better.