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imatinib v newer TKI's

Hi Guys

I've been on 400mg of Imatinib for 3 years now and have the usual side effects; tiredness, cramps, stomach problems (especially on waking up in the morning), eyes watering, bleeding of the eyes and more recently a lot of pressure in the head.

Would it be prudent to ask to change to another TKI or should i expect these side effects on other TKI's? Is it easy to change or will there be a cost implication for the Hospital? i assume so?

My side effects are not the end of the world but steadily getting worse and as my job is fairly physical would like to see if changing would make life a bit easier

Be good to hear from anyone with a similar story who moved to another TKI.

Thanks and keep up the fight!

Gary

Hi Gary

It is certainly worth thinking about a change if taking Glivec is causing you problems. Each of the available tki's have side effects but they all affect people differently. You are most likely to be offered Nilotinib as your change so it would be worth you having a look at the side effect profile of the drug before you make any decisions, there are certainly quite a few people who are doing really well on it and I am sure they will post a bit more about their experiences on here.

Good luck

K

Hi Karen

Thanks for the info. I'll have a look at Nilotinib.

Hi Gary,
access to one of the 2nd Gen TKIs depends on where you live. Nilotinib, as Karen has already suggested, is available through the NHS for both 2nd and 1st line therapy in England, as NICE recommended its use after the last HTA appraisal - its price is equal to standard dose imatinib. The SMC in Scotland also recommended nilotinib. So it should be easy for you to change to that TKI.

Dasatinib is currently more expensive. However, it is available in England through an application (by a doctor) to the CDF (cancer Drugs fund)-
in Scotland, Wales and N.Ireland you have to go through a different process as they do not have a CDF.

3rd generation TKIs bosutinib and ponatinib are currently available through a clinical study or compassionate use. However the good news is that bosutinib is available through the CDF in England. It is also currently going through the NICE HTA process-

(the NICE appraisal committee will publish their final decision some point in late Sept early October I think.

All TKIs have side effects but also all differ in their side effect profiles. You need to talk with your doctor about whether nilotinib would suit you and if not, which of the others might be a good choice- you should not 'put up with' imatinib side effects if they affect your quality of life.

If you are in England and your doctor is willing to fill in some forms (not complicated) and apply to the CDF then you might prefer dasatinib as an alternative given your busy working life.

BTW what has been your clinical response to imatinib? I assume your PCR results are good?

Sandy

Hi Sandy

Thanks once again for your very informative reply. My PCR results were fine the last time i attended hospital. I've just moved from Warwickshire to Edinburgh and meeting my new Consultant on Monday so will discuss my side effects then.

I seem to be getting more and more problems with tiredness and digestive problems recently so not sure what's happening there. I think you may be right about Dasatinib and Nilotinib seems like a bit of a pain to take and not really suitable to my work.

Once again, your comments are appreciated

Kind regards

Gary

Hi Gary

I was dx 9 years ago next week and have just received my latest PCR result of 0.014. I am intolerant to the TKI's which means they all work for me but they all have bad side effects.

I started for a about 5 years on Imatinib 400mg but then changed to Nilotinib 600mg where again I had an intolerance and on compassionate grounds trialled Bosutinib
Which for me me had the worse side effects. It hen changed back to Nilotinib 600mg. I'm now on 400mg Nilotinib once a day and suffer with the least effects.

Whats good for one person is bad for another and every one reacts differently. I would certainly try another drug and go with what's best for you.

Steven