bone marrow transplant

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Rebecca

Re: bone marrow transplant

Post by Rebecca » 15 Apr 2009 11:12

Thanks
I don't think my dad is going to have the reduded intensity bone marrow. The consultant said he has a 70% chance of making it through the BMT but then because of poss complications with graft v host etc plus chance of it coming back that it basically boils down to 50 50. My dad obviosuly doesnt want to take that risk. Its strange becuase I think we all went to the hospital thinking that a date would be set for the transplant but now its completely the opposite. So back to square one I think. My dad is 65 which i think in bmt years is quite old. We will try and see if he can continue with the vidaza for another 6 months and they arte going to check his bone marrow again because the first time they did it it was 24% blasts and then it was 10% blasts.

Sometimes I feel that there are no asnwers and the doctors dont know what will happen. I guess its just different for everyone.

Thanks x
Rebecca

Re: bone marrow transplant

Post by Rebecca » 15 Apr 2009 11:12

Thanks
I don't think my dad is going to have the reduded intensity bone marrow. The consultant said he has a 70% chance of making it through the BMT but then because of poss complications with graft v host etc plus chance of it coming back that it basically boils down to 50 50. My dad obviosuly doesnt want to take that risk. Its strange becuase I think we all went to the hospital thinking that a date would be set for the transplant but now its completely the opposite. So back to square one I think. My dad is 65 which i think in bmt years is quite old. We will try and see if he can continue with the vidaza for another 6 months and they arte going to check his bone marrow again because the first time they did it it was 24% blasts and then it was 10% blasts.

Sometimes I feel that there are no asnwers and the doctors dont know what will happen. I guess its just different for everyone.

Thanks x
Nigel

Re: bone marrow transplant

Post by Nigel » 15 Apr 2009 11:55

Hi Rebecca
sorry ... been offline for a few days.

Regarding the choice of UCH or Kings, I have no experience outside of Kings, but they really are recognised as a major centre of excellence in mds, and I wouldn't have made any other choice - as you will see elsewhere in the forum, they tend to have very busy / full clinics, but I for one put up with the delays for the standard of care (think we ask a lot of the NHS at times and don't seem to fund it as well as we might). They seem to have an enormous amount of experience and boundaries seem to be pushed all the time. I was 57 when diagnosed in 2005 (MDS RAEB t(9:5), then close to an upper age limit. I think my bmt was a reduced intensity (actually a pbsct - peripheral blood stem cell transplant which I think is the same thing). I only spent 4 weeks in Kings for flag chemo first (must admit I left a little early on this and felt pretty dire for some time afterwards ... my fault for pressuring them for early release), then six months later spent another four weeks in for the transplant (2 week prior and two weeks after the transplant). My prognosis was a median survival of eighteen months before the bmt, now just minor facial gvhd and good health otherwise. I think the risks were actually quite high for me, but my choices were limited.

As to the tests, guess I have got used to them ... the blood tests really aren't a big issue (guess I'm looking back at a hundred or more over three years), the bone marrow biopsies depend on the person doing them .. I now try to opt for a sedative if I can which really works.

I guess, trying to be practical and non-emotive, if your Dad can get a second opinion he would be able to make a better informed decision based on weighing up the odds.

Re your last comment ("I feel that there are no asnwers and the doctors dont know what will happen") - I think this always the case, they're learning as time goes on, adding the experience of each new case.

Wishing your dad the best
Nigel


Rebecca

Re: bone marrow transplant

Post by Rebecca » 17 Apr 2009 22:00

Thanks Nigel
My dad has decided to go to Kings now which I am of course pleased about. He is not that happy with the care and support at UCH. Perhaps Kings will be more positive about the bone marrow, like you say if your median survival isnt that long then..think my dad's is 2.7yrs but we don't talk about that bit much. I'm not sure what is the best way to be. I'm sure he doesnt need reminding of that fact but then maybe he would be more inclined to have the bone marrow.

Thanks for your comments they are really helpful and its great that you say you are generally healthy now despite what you have been through.

Take care

rebecca
jules
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Joined: 13 Jan 2009 18:02
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Re: bone marrow transplant

Post by jules » 26 Apr 2009 19:49

Hi Rebecca, sorry not to be here sooner. Thinking of you and your dad (where woukd we be without Nigel) I am still waiting for the bmt. I have an 80% chance of survival but 50% of dying within two years of diagnosis (that would be next year) so my choice is to go ahead but it's quite scary. You and your family have all my sympathy. I too am very grateful to Nigel
Keep smilin jules
jules
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Joined: 13 Jan 2009 18:02
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Re: bone marrow transplant

Post by jules » 01 Jun 2009 19:49

o:) hey nigel, you were so right , my siblings don't match so i'm just waiting now. Hope that you are ok jx alsohoping that your father is not feeling too bad rebeca and that your family are coping jx
jules
Posts: 30
Joined: 13 Jan 2009 18:02
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Re: bone marrow transplant

Post by jules » 01 Jun 2009 19:52

:-" Nigel, I was wondering how long ago you had the bmt jx
MDSAdmin

Re: bone marrow transplant

Post by MDSAdmin » 01 Jun 2009 21:13

Hi Jules
had my bmt in Sept 2006, and doing really good now.

Sorry to hear that, despite odds, your siblings don't match ... I don't know how typical I am, but the Anthony Nolan bank came up with a really good match after a three month wait ...there seemed to be just one factor that wasn't quite right so they went ahead. Pretty unpleasant for a short while, but I look back now and feel so lucky... biggest worries now are business related...

Personally think Anthony Nolan charity are doing a fantastic job - just down to getting as many people on the their books to inccrease chances of matches ...

Really hope things pan out for you as well as they have for me. Keep in touch
best wishes
Nigel




Nigel

Re: bone marrow transplant

Post by Nigel » 01 Jun 2009 21:13

Hi Jules
had my bmt in Sept 2006, and doing really good now.

Sorry to hear that, despite odds, your siblings don't match ... I don't know how typical I am, but the Anthony Nolan bank came up with a really good match after a three month wait ...there seemed to be just one factor that wasn't quite right so they went ahead. Pretty unpleasant for a short while, but I look back now and feel so lucky... biggest worries now are business related...

Personally think Anthony Nolan charity are doing a fantastic job - just down to getting as many people on the their books to inccrease chances of matches ...

Really hope things pan out for you as well as they have for me. Keep in touch
best wishes
Nigel




jules
Posts: 30
Joined: 13 Jan 2009 18:02
Contact:

Re: bone marrow transplant

Post by jules » 21 Jul 2009 19:06

Hi again Nigel, Just to say that I now have a match and a date to start treatment (how scary) should start on 24th August. Will soon be pickng youur brains again.Do you know how Rebecca is ? Am hoping you are well, I have told people about you when they worry about the procedure and that you are fine. Hope you are enjoying the summer

keep smilin, jules
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