bone marrow transplant

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Nigel

Re: bone marrow transplant

Post by Nigel » 24 Jul 2009 19:02

Hi Jules
I've been offline for a while and missed this. Brilliant that you have a match - is it from the Anthony Nolan bank?

Guessing you're booking into the Derek Mitchell unit ... nice little rooms but keep up the exercise whilst there ... I did a lot of pacing when I could, keeps the muscles going and the brain working! There were some smashing people up there ... if you come across a nursing assistant called Jackie keen on the natural world pls say 'hi' from me.

Think the food is a lot better than it used to be ... but if you can't face the food make sure you keep up your intake with some the high calory drinks ... you just have to ask sometimes.

I don't know what the statistics are, but I for one have done so well out of their efforts on the Kings team, and I could almost forget I ever had the rotten MDS thing.

btw, if you feel you can, it may be helpful to others if you could say what your category of MDS is, and age?

Me, I was 57 with REAB t(3;5) - not that I fully understand yet what that means - with a median life expectancy of 18months; now nearly three year on and only a slightly red face to show for it (which I guess you could put down to embarassment at the effort Prof Mufti's team put in on my behalf although they say it is gvhd)

Really, wishing you well, and if there is anything that I can answer, pls ask away!

very best
Nigel

PS When I posted this, for some reason I assumed you were under Kings, but wonder now if you are at Cambridge?
jules
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Re: bone marrow transplant

Post by jules » 27 Jul 2009 21:27

Hi NigelI am at Cambridge and the team there is really good. The match that has come up is from an american woman, there is also the possibility of a german donor if they have more resistance than the american, but for now that is who they are going with. So the transplant will have to be arranged with flights in mind as they have to bring over from whichever donor they choose. That being so I' not sure what register they would be on.

I am 47 and have RCMD which has a 50% chance of dying within two years of diagnosis.

thanks Jules
Nigel

Re: bone marrow transplant

Post by Nigel » 29 Jul 2009 20:06

Hi Jules,
I think it is amazing how things have come along since Anthony Nolan's life and, regardless of the bank, so much effort goes in to finding a suitable donor, transatlantic flights and all. I wonder if they have an internet connection in the rooms at Cambridge? At Kings I tried to keep in touch with a cellphone-like connections ... complete waste of time... probably enjoyed the peace and quiet anyway.

Really wish you well through this.

Keep in touch
Nigel
hamster007
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Joined: 30 Jul 2009 13:15

Re: bone marrow transplant

Post by hamster007 » 30 Jul 2009 13:45

Hi allTo introduce myself - my name is Jonny, 57. After finding the symptoms in mid-March I was diagnosed in May at Bath RUH with MDS (Refractory cytopenia with multi-lineage dysplasia - RCMD?). I am fortunate enough to have four siblings and of the three who have been tested two had matching tissue type to mine. I consider this to be a pretty good omen.

I'm finding the condition itself to be highly intrusive and at the moment find the alternative to transplant completely unacceptable. Obviously I will need to get used to that if they bump me from the transplant route. At the moment though I am focussed very positively on the steps to SCT and want to be fit enough next year to walk coast to coast across the Pennines. As walking upstairs has me puffing at the moment there will have to be some fairly drastic improvement !

This week I went to the Adult BMT unit at Bristol Royal Childrens Hospital for an assessment and am told that I am on the list for a reduced intensity transplant within 6 months. Although I vaguely understood the reason to delay the op (other than the barrage of tests to make sure I am up to it) it is unnerving to be told that they want to see a progression in the condition before proceeding as statistics show this would provide the optimum chances of a successful outcome. I wonder if anyone else has a better understanding of this issue?

Jonny
jules
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Re: bone marrow transplant

Post by jules » 30 Jul 2009 19:01

Hi Nigelthey tell me that there is wifi so fingers crossed. Thanks I will you may regret that. Do you know how rebecca's father is?

take care jules
jules
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Re: bone marrow transplant

Post by jules » 30 Jul 2009 19:01

Hi Nigelthey tell me that there is wifi so fingers crossed. Thanks I will you may regret that. Do you know how rebecca's father is?

take care jules
Rebecca

Re: bone marrow transplant

Post by Rebecca » 05 Aug 2009 10:24

Hi Jules
Hi Nigel

So sorry to reply sooner.

Thats fantastic news about the match. I'm really pleased for you.

My dad seems fine at the moment thanks. As you know his sibling is a match but the UCH donor team weren't too positive about the sucess of the transplant. My dad is 65 so thats why its more risky. However we have an appointment at Kings on 18th August 09 to get a second opinion re the transplant and everything in general. I'll let you know what they say.

So Jules, do you go in on the 24th Aug 09? How long do they think you wil have to stay in for? Its such great news you have a match. I feel confident that it will be a success. Look at Nigel! Will definitely write before you go in.

Take Care

Rebecca

jules
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Re: bone marrow transplant

Post by jules » 09 Aug 2009 16:38

Hi Rebecca
I'm glad that your dad is not having too bad a time of at the moment. I find the run -up to hospital appointments makes me really twitchy so I hope they can tell him something positive on the 18th. I go in onthe 23rd (al being well) and should be out in early october. thanks for your support

jules
jules
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Re: bone marrow transplant

Post by jules » 09 Aug 2009 16:38

Hi Rebecca
I'm glad that your dad is not having too bad a time of at the moment. I find the run -up to hospital appointments makes me really twitchy so I hope they can tell him something positive on the 18th. I go in onthe 23rd (al being well) and should be out in early october. thanks for your support

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

Post by jules » 09 Aug 2009 16:41

Hi Jonny,
I too have rcmd and have found it all very confusing. I was told that bmt was the last resort one month and the following month was told that I should have one. So I can't realy help you but I do know how cnfused you are

Hope someone can shed some lighton it for you

jules
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