Hello everyone,been on Dasatinib for about 3 months now felt great but now not so much .Does anyone think their eyesight has changed ,only had my prescription changed about 2 months ago and my eyes have changed already I can no longer read small print,it hasn't happened gradually woke up one morning and realised I couldn't read properly.Also I have now developed pain in the top of my thigh feels like something trapped and hip joint hurts so I can't walk very far .I am 62 so could be old age I know but these symptoms have happened suddenly.Anyone else been affected like this.Thank you, Denise.
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Dasatinib any eye or pain problems
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I guess the more likely culprit is, unfortunately, ageing. But I would not rule out other causes.
It’s only a case report, but there is precedent for dasatinib causing vision problems - quite acutely. Here’s the link to the report on Medline.
Abstract: https://www.ncbi.nlm.nih.gov/pubmed/26155085
Report: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4487962/
Sorry that it’s not a massive help. But at least it shows that this is a possible effect of dasatinib - even if the report does say that these side effects are practically non-existant and that this report discusses a very unusual case.
David.
Hi David ,thank you for replying to me ,my consultant was very dismissive when I mentioned it ,he said have you been reading the leaflet inside the box ,take no notice of any of that you wouldn't take paracetamol if you read about it .I am sure people who have pleural effusions wouldn't agree with his statement of take no notice of any of that.
It’s really hard to know what is a CML problem a TKI problem ... or just another problem. My general feeling is that people are way too quick to blame things on CML/TKI when there’s another explanation. We are not superhuman. But all the same, you or your doctor should not swing the other way altogether and discount any problems. We know CML and TKIs cause problems, so should not ignore that.
My doctor is very practical - I’ve been lucky to have had the same one since diagnosis. When I’ve had problems we look at the half-life of the drug and the “wash out” period (about 10 days), then you can get more clarity if it’s a drug problem or not. Doesn’t always work, but at least it’s an avenue to explore.
What’s your most recent PCR?
David.
That is a good low number, heading down to MR4 soon - hopefully.
Assuming you are taking 100mg of dasastinib, perhaps you could discuss a dose reduction with your doctor. Scuba has explained many times on this forum (so I'll defer to him on the details) that more dasatinib does not necessarily equate to better / stronger management of CML. However lower doses have a lower side effect profille.
This is the study you would point to regarding more not necessarily better. NB that this is just one trial and its findings may not be replicated elsewhere. The authors of this study say that their patient population does not have many high risk patients, so larger trials with a varied patient group are needed to validate it. But it looks very promising.
https://www.ncbi.nlm.nih.gov/pubmed/29723397
You can get the full text here:
https://onlinelibrary.wiley.com/doi/full/10.1002/cncr.31357
David.
Your body your rules, as far as I’m concerned. I’ve had that discussion with my doctor a few times - she’s fab, probably at the more cautious end of the spectrum but fully respects my ownership of my treatment and has helped wean me down from 100mg to 20mg currently. I get to lower my dose, and in return to be more cautious I get monthly PCR tests so the risks can be monitored and therefore managed.
On the eye issues, though, you’re not going to find anyone who will give you a definitive link between that and dasatinib. It’s a tricky one, because if you stopped taking dasatinib altogether it would probably take a while for your eyes to recover and prove any link for you and you are basically into a personal TFR trial at that point and at 0.04% that’s unlikely to be low enough to do that. Just from my own experience of eye issues at diagnosis it took several months to repair. So it’s not an easy one to test out by a temporary drug “holiday” like neuropathy caused by a TKI or similar.