You are here

update on my BMS saga

Hi
This is an update on the topic of BMS that I posted a few weeks ago.
I have had to stop the BMS. I had an episode a couple of weeks ago where I felt very hot and unwell, no temperature, was very short of breath and in fact my oxygen saturation levels were very low. I went into hospital for numerous tests which were all negative.
They stopped all my drugs, I still am not back to feeling 100%.
In the short term I am to stay off the medication and go back to the consultant in the New Year. My PCR is very low so it is not a problem.
He will then see if I can get on the AMN trial, although he thinks this is not likely to suit me any better.

Failing that he is suggesting the BMT. I do have a sibling match.

I am not happy!
Susan

I am sorry you are having such a difficult time with BMS. If you ever want to talk things over, don't hesitate to get in touch.
Best wishes
David

dear susan, sorry to hear of you problems with the inhibitor drugs. your doctor may well be right about you having the same problem with tasigna (amn107) as all three drugs target at least one of the same cell signalling pathways and would therefore have similar side effects.
however, you can only try and see if tasigna is somehow a better 'fit' for you.
i can tell you from personal experience that a mini-allo (nmbpbsct)with a sibling donor is not as hard to take as you may imagine.... but hopefully thing will resolve for you.
best wishes,
sandy C ;o)

Thanks Sandy for the words of the encouragement.

Realistically I realise that the AMN is unlikely to suit me if the other 2 drugs haven't. However I do have to try and then it is onto the BMT.
We will make more definite plans in the New Year then I will coming back for more advice and support.

with best wishes
Susan