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Has anyone else had speech difficulty on dasatinib (or nilotinib)

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I have an appointment with a speech therapist on Friday.  I ask because my primary care doctor thinks I should pursue speech therapy to try to ascertain the source of the problem.  I've looked through the forum and it seems my speech difficulty is unique, not a side effect of the TKIs that others have experienced?  Knowing if others have had this challenge may be useful in trying to get to the root of my speech problem.

I've had speech difficulties that started in late July on nilotinib, but seemed to mostly abate when I was taken off nilotinib due to TIA.  I've been on dasatinib since early August, 100 mg to start and 50 mg as of early October.  My difficulty seems to be mostly finding words.  The problem surges, then slowly dissipates.  I normally speak very fast, with no troubles keeping up with my thoughts.  I'm learning to slow down to accommodate the problem.  Given how fast I normally talk most of the time only people who know me well notice.  On particularly bad days I've had to end conversations as best I can when I just can't find words.  On good days I'm the only one who notices a bit of hesitation pulling the needed word from my mental files, or the occasional skipped syllable in speech.  Of course I've had a particularly good week for speech this past week now that I've finally made it off the wait list for a speech therapy appointment.  But the problem has escalated a couple times, once badly at the end of October, so I'm going forward with the appointment.  I've found the inability to communicate well to be quite upsetting, and the return to good speech puts me in a much better frame of mind.

Maria

Yes, I am having similar problems! I have been on Dasatinib since October 2018 and often struggle to find the words I am looking for. Some days are worse than others - I wasn't really sure if it was connected to the treatment, or just my brain naturally becoming more forgetful but it is very frustrating. I haven't brought it up with my doctor at all but maybe I will the next time I see him. It's nice to hear that someone else is having the same problem (well, not nice obviously, but you know what I mean!). I hope that you get somewhere with the speech therapy - it's not something I'd considered so I'd be interested in hearing how you're getting along.

I think the real difficulty here, which mandomei has successfully navigated, is getting your consultants to give you the referral. A worse one would have fobbed her off. Haematologists treat blood, and they are good at that (for the most part) but when you bring up issues you have which are not well known for the drug you are taking they can sometimes be very quick to dismiss it as something else. That’s not a criticism really, they’re specialists not generalists. 

I’m lucky, my haematologist is amazing. But when I’ve spoken to her about others people I know who are having “unrelated” problems, she suggested that sometimes it’s best to go back to your GP / primary care doctor and get the referral you need through that chain.

Over the years with CML I’ve learned that it is really important to understand and to be able to navigate the medical world as a patient as best as it can possibly work for you.

David.

It was my primary care doctor that provided the referral.  I'd discussed with him that I planned on seeing a speech therapist once all my other side effects settled out if I was still having speech problems.  He suggested I should do so sooner rather than later as a speech therapist could be helpful in getting to the source of the problem.  Apparently speech therapists are in demand as I was on a waiting list for a bit before I got the call for an appointment.

Did your speech problems begin after you started taking the dasatinib? 

It has been clear to me that the speech problem is related to the drugs.  The other option is that a totally unrelated problem came up in the same time frame, which seems extremely unlikely.  

Maria

100 mg dasatinib since early May 2018.   
 

I find myself losing words - and not just those that are obscure or rarely used.   Names too.   I’m only 56, so I don’t think it’s just “normal aging”.   If I had this issue before the diagnosis I don’t recall it being that frequent.   Now it’s many times a week.   

Yes, I have trouble with talking to my haematologist about side effects. I've only seen him twice, but the first time I tried to bring up some of the side effects (fatigue, brain fog, low mood sometimes etc) he just shrugged it off and said that could be anything. Not a great response..... I've since taken the contact details of a specialist nurse who I'm hoping will be more inclined to be helpful!

Yes, I think they did. I was initially struggling with fatigue and depression when I first started on Dasatinib so I didn't notice how often I was missing words (or I attributed it to the fatigue), but now that those side-effects have calmed down a lot, the speech problem is more noticeable. My partner says he has definitely noticed it and thinks it happened after starting the treatment. It doesn't really get in the way of daily life, it just makes me seem a lot less articulate....and can be frustrating on days when it is particularly bad! It also makes it seem like I just haven't been paying attention, because I will not be able to recall names and places quickly. (It's not that I don't remember what the person is referring to, I just can't find the word).

Same - and I'm 33!

So there are at least three of us.  For me it is the most difficult professionally.  I've taken to preparing verbose notes for meetings where I will need to present so if my words fail me I can just read from the notes.  That still leaves me struggling on bad days when dealing with discussions and questions where I cannot prepare ahead of time.  It does seem to be getting better on the reduced dose.

This first appointment with the speech therapist is an evaluation, deciding who in the group I should see.  I will post if/when I get any good information from them.

Maria

A patient meeting was held in Birmingham England on 9 November where Dr Manjov Raghaven presented and discussed the subject of TKI side effects. The majority of the patients present at that meeting  said that they had suffered "loss of language" and "forgetfulness" along the lines that you describe in this posting. Personally, I have not experienced this problem so far. Dr Raghaven said that he was not familiar with this complaint from CML patients but that he would discuss this with fellow consultants particularly in trying to understand how the TKI penetrates the brain.

Patients taking a range of TKIs (including imatinib and dasatinib) had the same problem.

 

Well that is not reassuring as far as my finding a way to improve my speech while still on the TKI. 

Dasatinib does cross the blood brain barrier.  https://www.ncbi.nlm.nih.gov/pubmed/18477770   I don't know if this is actually relevant to speech issues and forgetfulness, but I remembered seeing the article when I read your comment so looked it up.

Maria

Just back and catching up here.  Yes, yes, yes to the problems described above, and yes to the timing of it being after diagnosis and starting imatinib and then (especially) dasatinib.  But, of course, I'm ten years older, too!  And the world is a trillion times busier with more stuff to grab your attention constantly to be processed.  And life sends you more hills to overcome (other physical problems, people around you dying or getting dementia, personal climate disasters, financial worries, children going off rails - the list goes on).  It's hard to know if dasatinib is contributing.  It's good you have another pair of eyes looking at your symptoms for insight into the cause and also to help you learn coping strategies.

I did have my first appointment with the speech therapist on Friday, an evaluation with lots of tests.  There were two possible outcomes, the first being my speech problems have a neurological source, perhaps from the TIA (the end of my nilotinib).  That seemed unlikely given that the worst of my speech problems were well after that while I was on dasatinib.  The second option was that it is the drug.  Either way the speech therapist can help.  The tests confirmed the source of the problem is not neurological.  So what I will get is help with compensatory strategies for managing the problem.  Two more appointments to work on this, the first of which is this Friday.  

So even if it is "just a side effect of the drug" a speech therapist can help.  Since this does affect me professionally I am proceeding with getting any help I can.  

Thread continued from: 
Neurological side effects with nilotinib or dasatinib