bone marrow transplant

Post here for ANY bone marrow transplant related issues

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jules
Posts: 30
Joined: 13 Jan 2009 18:02
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bone marrow transplant

Postby jules » 26 Feb 2009 16:53

Hi everyone (or anyone)
I have just been told that I should have a bone marrow transplant. Has anyone any advice that they wish they had been given.

Jules
Nigel

Re: bone marrow transplant

Postby Nigel » 26 Feb 2009 18:56

Hi Jules
I had a transplant in Sept 2006 and the only issues I still have are very minor gvhd and a tendancy to over-eat - the latter I really cannot blame on the transplant :-" !

I was very lucky both with my initial referral (to Kings, a 'centre of excellence' for MDS, why go elsewhere?) and the advice and care that I recieved through-out.

A lot goes on in the course of the process; one of my original misconceptions was over the transplant itself ... transpires that I had a 'peripheral blood stem cell transplant' (PBSCT) which I think is of a much lower intensity than a full blown bone marrow transplant.

Despite four siblings, I didn't get a match and waited (it seemed interminable) for an Anthony Nolan donor - and ended up with a really close match for which I will be forever grateful. There was then a protracted delay between my one bout of chemo (preparing for the transplant) and the transplant itself due to a few other health complications.

So, one bit of advice would have been - be prepared to be a patient patient and make sure you have stuff to keep you physically and mentally occupied during what can be a lengthy process.

Michelle Kenyans book (7 steps) is really worthwhile, helping to keep track of where you are with things!

If there is anything more I can say that will help, pls let me know.

best wishes
Nigel
jules
Posts: 30
Joined: 13 Jan 2009 18:02
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Re: bone marrow transplant

Postby jules » 24 Mar 2009 12:58

Thanks Nigel, my siblings are currently being tested (I have 3) but as you say its not guaranteed that they will match. I will look for the book. There will probably be 101 things I will think of to ask you as soon as I log off
thanks again
Jules
jules
Posts: 30
Joined: 13 Jan 2009 18:02
Contact:

Re: bone marrow transplant

Postby jules » 04 Apr 2009 22:15

hi nigel,don't know if i'm doing this right . I just wondered how the gvhd is affecting you, would be really grateful as the dox won't say much apart from it can happ
en and cause unforeseen problems

many thanx jules:-"
Nigel

Re: bone marrow transplant

Postby Nigel » 05 Apr 2009 18:15

Hi Jules
I think I have ben lucky in that the only effect that my gvhd now has is an occasional over-red face ... comes and goes a bit (seems to blow up more under stress). If it gets bad I treat it with hydrocortisone (1%), but rarely do this now. At one stage more of my skin was affected and was into using protopic and hydrocortisone over most of me.

I have been told by my consultant that it is actually a good thing to have a bit of gvhd in a minor form - I have a mixed CD3 chimerism after my transplant (some of my old cells are hanging around) - I think the gvhd helps keeps the old me at bay.

I know I was warned that gvhd can cause issues elsewhere (other organs) but not sure how common this is.

One of the things I failed to understand in the early days was the difference between acute and chronic (gvhd) - acute is in the early days post-transplant (and I think more serious) and chronic is continued over time in a less severe form (as is mine).

For me now, it is a simple anoyance that comes and goes.

Hope this helps but pls ask if I can help further

best wishes
Nigel
jules
Posts: 30
Joined: 13 Jan 2009 18:02
Contact:

Re: bone marrow transplant

Postby jules » 06 Apr 2009 21:17

Thanks Nigel there are probably hundreds but its great to talk to someone who has been here
will msg again if you don't mind

Jules :-"
jules
Posts: 30
Joined: 13 Jan 2009 18:02
Contact:

Re: bone marrow transplant

Postby jules » 06 Apr 2009 21:17

Thanks Nigel there are probably hundreds but its great to talk to someone who has been here
will msg again if you don't mind

Jules :-"
Nigel

Re: bone marrow transplant

Postby Nigel » 06 Apr 2009 21:32

No problem Jules,best wishes
Nigel
Rebecca
Posts: 16
Joined: 28 Dec 2008 12:46

Re: bone marrow transplant

Postby Rebecca » 13 Apr 2009 01:16

Nigel and Jules
My dad has MDS (raeb with excess blasts 10%) he was diagnosed in Nov 08 and is having a 6 month course of Vidaza which although hasn't improved his low white blood count significantly it has gone up a little bit and definitely has not got worse. He was very lucky that one of his three brothers is a bone marrow match. My dad is 65 and generally in good shape. He is seeing a team at UCH in Euston and we have an appointment with the bone marrow team on tuesday to discuss everything. Its strange because my dad looks so fine but I know he has a serious illness. I'm not sure what my point is but really just to say hello and although I know its not me going through its good to read and communicate with others like my dad. My dad hasn't really read that much about MDS and relies on me to fill him in. At the beginning I got him to read things about it but now I feel like we are all trying to lead normal lives until the day of the transplant (if he definitely decides to have it). My dad and of course the rest ff my family have lots of questions for the transplant team, its so hard to know what the best thing to do is. He will be having a mini transplant because of his age.

Nigel
I did have some communication with Kings at the early stages but then my dad decided to stick with UCH which is of course a good hospital. He also has private healthcare. I keep thinking maybe we should go to kings because of prof Mufti but my dad would have to go through all the tests again etc and it would probably be more stressful for him. What do you think?

I'll let you both know what they say on tuesday.

Nigel did you have the full bmt or reduced intensity? How long were you in hospital?

My dad has low white blood cells, all the others are ok. This doesnt seem commom amongst mds patients?

Take Care, thanks Rebecca
jules
Posts: 30
Joined: 13 Jan 2009 18:02
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Re: bone marrow transplant

Postby jules » 14 Apr 2009 22:29

Hi Rebecca hope everything is as good as poss. This must be quite a worry for you
keep smilin, Jules

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