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Dosantinib

Hi, I'm currently on Glivec and in full remission, my pcr level has risen in my last 2 tests. I have been advised that I will be put on Dosantinib if it has risen in my next pcr test. When I first went on glivec my side effects seemed to lessen after a few months and I still manage to work full time.

I'm concerned about the effect Dosantinib side effects may have on me being able to continue working.
Does anyone have experience of the possible side effects from this drug and if they are any worse than Glivec's side effects?

so assume you mean Dasatinib?

I switched from Imatinib about 3 years ago, following a mutation of some sort

It has really transformed my life in many ways, On imatanib the side effects where tolerable but not great. However have switched:

1. I lost the 10kgs I had put on in 3 months - without changing diet
2. 99% of the nausea and occasional diarrhoea disappeared over night
3. I became able to do physical exercise for more than 20 minutes at a time - regular 10K runner now
4. My energy levels increased massively
5. My skin and toe/finger nails returned to normal - prior to that they where very thin. I couldn't stay in sun for more than 15 minutes without burning, nails split easy
6. Easy bruising gone
7. Cuts that wouldn't heal gone
8. Excema reduced (always struggled with that prior to dx)

I was on Imatanib for 4 years I think prior to the switch and a 43 year old male...

Of course everyone is different and I guess you won't know until you try - but hopefully my experience will make you less worried...

Also if you are in England/wales I didn't think you could get Dasatanib for new patients any more unless you applied for something special

Rob

Just to reassure you about access to dasatinib. In England it is available through the Cancer Drug Fund, in Wales, Scotland and N.Ireland there is a different system which is based on and individual request by doctors on behalf of their patients.
See post in red at top of this page which outlines access issues in UK and how to access TKIs in England that have not been approved by NICE.

Rob's post should reassure you about switching therapy. Hopefully you will see improvement in PCRs as well as side effects.

Best...Sandy

Thanks for the replies, its reassuring to hear from someone who has experience of both Glivec and Dasatinib and that there were less side effects from Dasatanib than Glivec.

Thanks also for the advice on access to Dasatanib.

forgot to say the only slightly -ve I have had with Dasatanib is the occasional painful spot and I think that is something that a lot od people on Dasatanib suffer from.

rob

.... are there for me too, but generally things are ok on Dasatinib and I carry on life pretty much as before dx although it requires a positive frame of mind.

Dry skin, some spotty rash on the face, big nasty red spots almost anywhere on occasions and some occasional fatigue are the main issues after 18 months on the drug, also 'tired eyes' (I keep rubbing them).

Rod