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Hi guys, hope you are all doing well. I've just had my medication changed to myelostat and read that it has severe nausea and hair loss as some of the side effects , has anyone else experienced side effects please. I am trying to plan as I have an autistic 11 year old and need to see how best to manage any side effects , as on imatinib I had chills and some hair greying but nothing too severe . Thank you

Hi there,

I don’t have any experience with this medication, but others may know it better by it’s other names - Omacetaxine or Synribo, but if I’m reading things right this is an oral version (usually subcutaneous injection)? It’s not used here in the UK as it it not considered very effective.

What other TKIs besides imatinib have you tried?

David. 

Hi David
Sorry for the late reply, also nilotab, both not able to tolerate and started getting signs of toxicity.
Thanks for reply
Sam

Sam,

Bosutinib often works for patients who have had issues with other TKIs. The evidence seems to suggest it is somewhat more gentle in terms of side effect profile. Omacetaxine just isn't going to be nearly anywhere as effective as a TKI. You should really exhaust all TKI options. Here, if all TKI options have been tried the next step would be a transplant of some sort.

Also, imatinib and nilotinib are fairly similar molecules so you could find one of the others gives you little trouble in comparison. Just because they both gave you problems doesn't necessarily mean others will.

David.