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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Re: bone marrow transplant

Postby jules » 27 Mar 2010 19:08

Hi there everyone I haven't posted for ages but am staying awake for longer times. It sounds like you are all going through it a bit I wish you all the luck and good spirits. I have had my line removed and my hair is now growing back. I am reducing the main tablet (an immune-suppressant) and feel on the home stretch now. I know there's a way to go still but am feeling very upbeat.
jules x
nigem
Posts: 13
Joined: 04 Jun 2009 15:11
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Re: bone marrow transplant

Postby nigem » 28 Mar 2010 22:37

Really good to hear from you, and that you are doing so well. Nick gets his next BMB in 10 days , then its transplant. It all seems like the next big step in this process.Gemx
Karen
Posts: 34
Joined: 10 Sep 2010 14:46
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Re: bone marrow transplant

Postby Karen » 05 Jul 2011 11:25

Hello

It's really useful to read your experiences, thank you for taking the time to post them.

My Dad has been told by the team at Kings that since he is becoming transfusion dependant they want to look into a BMT. They have found a donor (non family) and want to discuss going forward at his next appointment in 2 weeks.

We've read plenty about how the process takes place, but what we don't know is those invaluable pieces of information only someone who has experienced a BMT knows. Do you have any advice on ways to prep for the procedure, or things that you know now that you wish that you'd known going in? Are there specific things that we the family can do to support him through this?

Naturally we are all worried about the risk factors, and Dad is trying to get his head around the BMT risks/benefits vs the risks/benefits of using less intensive treatment and the impact on quality of life etc.

It's all rather scary and a bit confusing at the moment.

Karen x
chris
Posts: 576
Joined: 01 Dec 2009 21:52
Location: Essex
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Re: bone marrow transplant

Postby chris » 05 Jul 2011 15:04

Hi Karen

It is indeed a difficult and scary decision to make and also difficult to find accurate information about the risks and benefits as I have asked about whether success rates are in public domain but it seems they are not - unlike heart transplants and hip ops!! I have found the AA and MDS Foundation website very informative and there are webinars which you can watch/listen to. The first link below is specifically about stem cell transplants and the 2nd link is a page of webinars on various topics but I suggest you scroll down and look at ones about treating high-risk MDS as this would be what your father has if he is in the frame for a stem cell transplant. There are also lots of webinars about all the treatment options now available including Azacitidine and supportive care. I would say that you do need to spend a fair bit of time listening to the options but it could help you all when deciding what is the best option as this is quite an individual thing and your Dad should not feel pressurised into undergoing a stem cell transplant if he does not feel it is right for him. Yes, of course, it may represent hope of a cure and that would be what you would all wish for but the info on whether it will work,how long the cure lasts and what the side-effects in any individual case might be is difficult to obtain. There is significant risk to the procedure itself and the team at King's should be able to tell you what the risks are - although some people,even when told a procedure has a very small chance of success will always take the gamble and others would not. I don't envy you all weighing all this up and ultimately it is your Dad's choice. I wish you well at this very difficult time.


[url]
https://live.blueskybroadcast.com/bsb/c ... 4&CAT=1090[/url]
[url]
https://live.blueskybroadcast.com/bsb/c ... 44&CAT=948[/url]

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
Karen
Posts: 34
Joined: 10 Sep 2010 14:46
Contact:

Re: bone marrow transplant

Postby Karen » 05 Jul 2011 16:17

Hello Chris

Thank you for your response.

We'll take a look at the webinars that you linked to.

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

Postby jules » 13 Jul 2011 20:13

Hi karen, I had the reduced intensity chemo and although it is called reduced it is still pretty major. We went to Addenbrookes and were able to see the ward before being admitted. I took books with me but after the first few days I didn't read as I couldn't focus. Some people become very light and sound sensitive and so they spend a while in darkened room. Ice lolly and jelly slip down quite easily. I went off things inexplicably because they tasted wrong.

Your father may withdraw into himself. He will know that you are there and love you for it but he may just be too ill to show it.

I had mine 18 months ago and am doing fine after a slightly shaky start. If you want to you can pm me and I will give you my phone number and that way you or any of your family can talk direct

keep smilin :) Jules x

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