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possible BMT looming - somewhat scared

Hi , as some of you may know I was dx August 2010 and started on Spirit 2 trial, on dasatinib, in September. Initial results were promising...however after a possible 'blip' last month and few (4) metaphases from the BMB, other tests were done. My consultant asked me to see him for a special appointment yesterday so we would have plenty of time to discuss things. So it turns out I have the dreaded TI351 mutation. So from initally a range of options and drugs, there are now only 2 main ones. Consider joining the PACE trial based at the Hammersmith, I think some other forum members may be on this? Or the more drastic but potentially curative Bone Marrow Transplant, with a non-related donor. Because of my age (41) and still relative good health (aside from the leukaemia that is :)) my consultant is tending to favour the BMT option, and will give more chance of a future.

any comments , ideas about how to prepare if I go down the BMT route would be appreciated. I think that Sandy on your blog you listed various 'alternative' things that supported you in your transplant...how do people cope with the solitary confinement?

It feels very scarey to be at this stage so soon after diagnosis, so any comments would be appreciated including qs to ask both the Hammersmith trial and the BMT unit.

Needless to say I will be doing all I can re NICE and the funding issue.

thank you

jo

Hi Jo,

sorry to hear you have to go through this - T315i is the ultimate drug resistant mutation, so no current TKI will be effective on this. re: PACE - I am not sure what the data is so far on how this efffective this new drug is.

That is the main question you can ask- it might then be worth going on the trial whilst waiting to find a donor? You could have everything to gain from doing that.

I am not sure if you would be eligble but you might also ask Hammersmith about the possibily of you enrollng in their reduced intensity stem cell transplant study. this is the kind of transplant I had and although slower to reach total negativity it is much safer and less 'challenging'- 

I was part of the HH study of this kind of transplant even though I had an imatinib resistant mutation..... this is significant because after the  tranplant I was put on 400mg imatinib (remember I was resistant) and to the surprise of everyone I had regained my sensitivity- I remained on 400mg for 11 months- then was monitored until the bcr/abl level started to rise. I was then given DLI (donor leukocyte infusions) in small doses at 12 week intervals until all evidence of bcr/abl disappeared and I was declared 'cured'.

It might be that you would qualify- you should ask- I actually insisted ;o) which is why the let me do it.

let me know if you need any other advice. ... but you should consider the PACE trial- at least as an interim.

best wishes,

Sandy

Hi Sandy - thanks for this, the reduced intensity sounds like it could be worth enquiring about. Do you have to have a sibling donor for that?

Although I have heard of the PACE trial I don't know much about it so think it will be worth finding out a little more - I'm hoping my appointment will come through soon.

will keep you posted - and no doubt come back with more queries!

thanks

jo

Hi Jo

 

I had a 'mini' BMT as I was intolerant to glivec. This was over 3 and a half years ago and so far doing pretty good. I was 50 when I had it and I was lucky enough to have a sibling donor. It is not necessary to have a sibling donor. 

I had a very easy time during the whole process and was only in hospital for 2 and a half weeks in total; something of a world record I was told! I am very happy to answer questions about the whole process. I had my tx at the Royal Free Hospital in London. 

I do have a blog - link on the home page - which I started just before I went into hospital. 

Wishing you lots of luck and don't hesitate to email me if you have any questions.

regards

Susan

Hi Jo, Sorry to hear about your problems. Yesterday I attended HH for screening to go on the PACE trial. Although I don't have all the information yet I have a lot of reading material explaining what is what.  Part of the trial is also looking at treatment concerning the T1351 mutation. If I can help at all please get in touch.

Wishing you all the best

Ali

Hi Jo,

Sorry to hear your news,with a transplant it all comes down to the % match with the donor,That with your age,general health info,and number of cml cells you have, the doctor can work out % rate of success for your transplant.

I had a 85% match and regret having the transplant,transplant went great but lots of graft v host problems.So please read up on post transplant problems.

That said transplant units have fantastic staff,and a very safe place to be and lots of people have trouble free transplants just get the best match you can. 

Hi ALi, thanks for the information - I thought you were somewhere along the line with the PACE trial. I will email you some questions if you don't mind which you may know a bit about if you have lots to read - that might help me when I get to the Hammersmith! Hope you are feeling better than you were a few weeks ago. Take care

JO

Hi Michael

Thank you for the encouragement about the staff and that people can have sucessful transplants, but thank you too for the note of caution re %match. Something else to bear in mind. Are you finding your problems are decreasing or increasing as time goes on? I'm guessing though it was a last resort for you too? (you have a blog too don't you? - must have a proper read of it)

best wishes to you

Jo

Hi Susan

thank you for getting in touch. I had looked at your blog in the past, was impressed with how you were dealing with everything - thank you for sharing your story. I don't know your email, but mine is diywid@supanet.com if you care to send me yours? If I do get to the BMT stage, I will probably have lots of questions! I will ask the BMT bod at Bristol about reduced intensity stem-cell - my nurse says he is a pioneer in the field, so hopefully he can give me good advice on all of it.

best wishes

JO

I am the lower case michael,Sorry no blog,My problems are increasing I was at deaths door a few weeks back and I found it amazing how quickly the body can recover with the right treatment.

I am in clinic most weeks at kings and have seen many post transplant patients go from weekly to monthly to 3 monthly apointments  lots of people living normal post transplant lives.

Take care

michael

 

 

 

 

 

 

 

 

 

Hi Jo, here is my e mail address if you would prefer to contact me this way; ali@loram.eclipse.co.uk