Hi,
Unfortunaly I am not responding to the TKI's & have just about run out of options on the drugs front. My BCR is rising very fast. I had the BMB last week & have now been told I need a transplant. Although i have thought it may well be on the cards its still a massive shock & I do think I am in shock. There is so much to take in. I am off on holiday soon (luckily they have said I can go, so i cant be too bad)! Then when I return I'll start on interferon 3 x weekly whilst they find a donor for me. Its anticipated they will perform the SCT in August/September time.
I now have to decide where to have it done, either HH or Bristol. Bristol is much closer for me & family & is a centre of excellance like HH, but London is so far away! Jo on this forum has kindly spoken to me & has been very happy with her treatment in Bristol.
I dont think I can quite take it all in.
You are here
BMB/SCT, bad news
Ali, the most important thing is to give yourself time to consider this news. As you say, they are allowing you to go on holiday so you are not in danger.
Have they talked about which kind of sct you might have? i.e a reduced intensity sct might be available to you if you ask. As you know this is the kind I had, and although it is not that pleasant it is not an ordeal.
You do not say what HH say about why you are so intolerant to TKIs in general or just how high your bcr/abl is .... but I do hope that when you get back you have made your decision about where to have your transplant. HH is one of the foremost transplant centres in the world- having been one of the first if not the first to perform one in the 70's. My experience of the transplant team was very positive- and I know others would say the same. But in the end it is where you feel most comfortable.
Ali.. if in the end, you do indeed need an sct then you can get through it.
Many others have survived long term and are now cured. Of course there are challenges, but if you know what they are- and ask if you don't-then you can make an informed choice, and strength comes from that.
Try to have a good holiday,
best to you,
Sandy
Hi Ali
So sorry to read your latest update and to hear that you are still not responding to and unable to tolerate the drugs. I just wanted to wish you well if you go the transplant route. I, too, was intolerant to the drugs and I had a SCT almost 5 years ago and I am still here to tell the tale. I had an easy time with the transplant but have had a few issues post transplant.
My blog is at caringbridge.org/visit/susanleigh
I had a mini SCT and was lucky enough to be in hospital less than 3 weeks. I had my transplant at the Royal Free Hospital here in London.
If I can help you at all in any way then please get in touch with me.
I wouldn't presume to recommend what you should do; we are all so different but just to add to what Sandy said, you can do it!
Let me know if you have any questions at all.
Take care and enjoy your holiday. I was allowed to go to America less than 6 months after my transplant so there is plenty of life post SCT!!
best wishes
Susan
Just to let you know I am now on interferon injections x 3 weekly and its not too bad! I know I,m on a fairly low dose but alls well. It will increase over the next few weeks/ months until a donor is found, hopefully.
I have decided to go to Bristol for the STC & start having all the relevant test ie lung funtion, heart etc at my local hospital and awaiting a visit to the transplant unit & prof marks.
wishing you all the best! x
Hi Lori,
good to hear your reaction to IFN is not too bad, and I hope as the dose is increased that this remains so. It might well be that IFN knocks your bcr/abl back to lower levels. I am not sure how far your % had risen but I do remember that even though you were intolerant of TKIs your bcr/abl levels got quite low... is that correct? If so it might well be that IFN will hold your disease stable. I know of other patients (in Germany) who are off TKI therapy and maintaining major molecular response over the long term with low dose Peg IFN.
Fingers crossed that all goes well for you,
Best, Sandy