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Some tough news..

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Hey again guys, I will introduce my self again. My name is Gudmundur and I am 29 yo from Iceland but currently living in DK with my girlfriend and 2yo daughter.

I had been on Gleevec and Tasigna for the past year and both I have been completely beaten down with side effects. Taking 100mg of Oxy per day to try to counter the side effects..

In the beginning of June she finally took me off Tasigna and two days later I started to feel so much better and "normal" again and able to cut down the Oxy and everything getting better.

Then middle of June came and the Philadelphia was back.. She put me on Sprycel because it was back and a week after that I am still feeling better and almost off the Oxy (difficult to quit oxy after 11 months on them, takes time). I was at the doctors today and it looks like it is not working and probably explains me feeling good... Now they have thrown out there the possibility of a transplant, the senior doctors are meeting today to talk about my case and review the options.

 

I just wanted to ask if anyone has gone through this and maybe I just need some encouraging words.

 

Thanks!

I am sorry to hear you do not seem to be responding well enough to dasatinib. Have you asked your doctors why they think this is? Have they identified a dasatinib resistant mutation? I assume - although you were intolerant of nilotinib (Tasigna) with a high level of side effects,  your PCR results showed you were responding well clinically to that drug?

The different TKIs are sensitive to different mutations. They should be able to test you to make sure if you have one and if so if that is the cause of your lack of response to dasatinib.

I am not sure if bosutinib (Bosulif) is available to you but unless your doctors have identified a multi drug resistant mutation (e.g.T315i is a multi-drug resistant mutation that is nevertheless sensitive to ponatinib) or some other clonal abnormality which puts you at risk of disease progression, then it might want to discuss other TKI options and exhausting them before taking the transplant route.

Sandy

Hi Sandy, all blood work was beautiful while on Tasigna but the with the side effects it wasn't a life to be honest..

About other drugs, the doctors are meeting today to talk about all this and what to do, he said today that there might be one more drug but they just mentioned the transplant to make me aware of it I think, next Thursday I will go and meet with the senior doctor at the department and discuss all of this.

I think they will try to avoid the transplant but after 3 different medications it is out there now.

 

I will update this thread when I hear back and let you guys know what will happen next.

 

- Gudmundur