Information required about BMT

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Karen
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Information required about BMT

Postby Karen » 04 Jul 2011 16:34

Hello

I think that I may have met some of you at the London MDS forum last year. I hope that you're keeping well. My father has MDS and he, my mother and I all attended the forum to try to learn a bit more about the condition.

After Dad's most recent visit to Kings the team there have suggested a BMT as the next step. A donor match has been found (more than one I think), and at the next visit in about two weeks the team there may be able to give more information about time frames etc.

Obviously, this has thrown up a lot of questions and concerns, and I was hoping that someone here who has been through a BMT (or has been a carer for someone who has) can give us some insight to the process and what to expect. Is a BMT a cure or does it just hold the MDS in abeyance for a few years longer? What do we need to take into consideration when balancing risk against benefit?

There's lots of information online about BMTs, the procedure, risk factors etc, but nothing beats personal experience. Naturally we're all very worried, as a BMT is a serious procedure.

If anyone could give any feedback I (and my parents) would be very grateful.

Karen x
janetstanford
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Re: Information required about BMT

Postby janetstanford » 04 Jul 2011 21:57

HI Karen

BMT go into expierence (spelling sorry ) section on forum there are posts from members on there which you may find some help and i am sure sophie may have some leaflets or web sites you can visit sure that would help your dad ect .....sophie may also be able to put you in touch with another person on the site who has been through a bmt which i am sure will help

good luck in your search
must go i am tired need a cuppa
Janet :)
Karen
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Re: Information required about BMT

Postby Karen » 05 Jul 2011 10:19

Hello Janet

Thank you for your reply.

I had a look in the experiences section before making my post, and I did find it helpful and informative. However, I didn't want to simply contact any of the members directly. I'll go back and have another read now.

Enjoy your cuppa :D

Karen x
janetstanford
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Re: Information required about BMT

Postby janetstanford » 05 Jul 2011 11:38

Hi yes i did enjoy my cuppa in fact having another now :D
sorry if i stated the obvious hope you did not mind tooo much :oops:
sure the Anthony Nolan trust would be able to send some info to you all which would put fears at bay..... may even be able to down load quicker it may help sure you could even e-mail them questions which they would answer ....

good luck Janet
Karen
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Re: Information required about BMT

Postby Karen » 05 Jul 2011 16:20

Janet

I found your post really helpful, and after taking your advice and reading those threads again, I posted there and got some useful information sent to me.

Thank you again.

Karen x

P.S. hope you've got a biccy with that cuppa!
lucy
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Re: Information required about BMT

Postby lucy » 11 Jul 2011 16:59

Hi Karen,
I'm sorry your father's MDS has got to the BMT stage. You asked if there was anyone with personal experience. I'm now 18 months out of transplant and feel great.
When I was first diagonosed with MDS in Nov 2007 I said there was no way that I would have a transplant if it became necessary, too risky etc etc. However a year later it was getting much worse with the blasts going up and all my blood counts going down. The consultant said that I would probably get an overwhelming infection and be dead within a year. That does sharpen one's thinking! I thought what have I got to loose, a few months, but everything to gain. I am so glad I made that decision to go ahead with it. I was lucky that I was in otherwise good health and had a sibling match. The only downside was that I was a bit on the old side, 58, but that didn't worry them.I had to have two lots of chemo to bring the blast count down and then had the transplant. It was about 17 weeks in hospital altogether, and I've had very few problems since.
I had the transplant at Southampton General as we only live about 10 minutes away and I was told they have the highest success rate for transplants in the UK.
A transplant is a cure, assuming you don't have a relapse, but you have to think positively.
If you are interested I set up a Caringbridge page as a journal of the whole adventure, which you are more than welcome to read. The link is:

[url][/url]http://www.caringbridge.org/visit/lucytearle

Hope all of this helps.
Lucy
Karen
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Re: Information required about BMT

Postby Karen » 12 Jul 2011 11:40

Hello Lucy

Thank you for your reply, and for the link - I shall be off to read it during my lunch break.

We know that there is a risk associated with a BMT, but I think that Dad's attitude is much as yours is. He is 63, but the doctors have suggested the BMT and so they must believe that the potential benefits outweigh the risks.

Karen x
chris
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Re: Information required about BMT

Postby chris » 13 Jul 2011 13:12

Hi Lucy

Thank you so much for sharing your story with the link to your blog. I have just spent an hour reading it and feel full of admiration for what you have gone through. You seemed to remain so upbeat and witty throughout - even when you must have been feeling so dreadfully ill. I am so glad that you have come through and are now feeling great.

I was interested to read your comment about the relative success rates of transplants in the UK as I feel this ought to be public domain information. When you choose to have a very risky procedure and you only have one shot at it, you want to go to the place that gives you the best odds and I have found it very difficult to know how to get that information? If Southampton are saying that they have the highest success rate, does this mean that the information is available within the medical arena?

Has anybody been able to find a reliable source of this information? I'm sure we would all be interested to know!

Best wishes

Chris
Chris. (F) Age 65. MDS diagnosed in 2008. Closest sub-type is CMML-1 but with anomalies! Normal red cells, low white cells and platelets, slightly raised monocytes. Enlarged spleen. No current treatment - active monitoring 3-
monthly.SE Essex
janetstanford
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Re: Information required about BMT

Postby janetstanford » 13 Jul 2011 14:16

Hi Chris
maybe Sophie could get us that info maybe even post or new section on the forum so those facing a transplant could read and make an informed choice or even you as you seem very good with computer tracking sites and info ....sure it would help us allall

all take care Janet :)
lucy
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Re: Information required about BMT

Postby lucy » 15 Jul 2011 11:21

Hi Chris,
With regard to the success rate at Southampton I was told that by a nurse on the BMT unit, when I mentioned something about Kings. It could be that she was being biased but Southampton has very successful research programs within the haematology department.
I would imagine that the hospitals don't give that information out as they would get inundated with possible patients and they tend to have "catchment areas". Southampton covers Hampshire, Dorset, West Sussex and the Channel Islands.
Lucy

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