My difficult bone marrow decision

[WTDY8]

Hi everyone my name is Wendy and I'm 67 years old. I was diagnosed with MDS beginning of year. At the moment I'm fit and healthy and test results are stable and because I'm so well but high risk of secondary Lukeamia in the future I am probably going to be offered a bone marrow transplant. 3 donners have been found and currently being tested to see if any are an excellent match. If any of you have had a similar decision to make I would welcome your thoughts, comments and experiences. Thankyou and I look forward to hearing from you.

[chris]

HI Wendy

Sorry I haven't seen your post before. The decision to go ahead with a stem cell transplant is not an easy one to make - particularly if you are currently feeling very well in yourself. When I was diagnosed 13 years ago STC was suggested as a possible treatment but fortunately, although my brother was found to be a perfect match, I have not had to make that decision and because of my age now (71) I think that ship has probably sailed!

Have you been able to get hold of a couple of books which would prepare you for the possible outcomes of a stem cell transplant? They are called The Seven Steps and Seven Steps - the next steps which is all about issues that people may experience post-transplant. Here is a link to the page on our website where you can download these books. I believe you can also get them free from Anthony Nolan?

https://mdspatientsupport.org.uk/what-i ... reatments/

There will also be lots of posts on this Forum from people who are undergoing/ have undergone transplants. Another suggestion would be to join one of our Patient Support meetings on Zoom as there are often people with differing experiences of transplant on there. It may also be possible to discuss your options and concerns with a Macmillan Counsellor or a counsellor at your hospital? It is a challenging and high-risk procedure and you need to be very certain about what you expect from it before you embark on it. I wish you all the best with your decision.
best wishes

Chris

[KASP6]

Hello,

I was very interested to read your message about your difficult bone marrow transplant decision.

My partner is 64 and has MDS. He too is in the middle of trying to decide whether to go ahead with a transplant.

I’d love to hear your experiences - my number is 07967 821729 if easier to message me directly.

Looking forward to hearing from you (and indeed anyone else who might be in this situation or has had a bone marrow transplant…)

Very best

Kirsty

[KASP6]

Dear All,

I am hoping that there maybe someone out there who has experience of treatment at The London Clinic?
I’d love to hear from you.
My number is +447967821729 is it’s easier to message me directly.
Looking forward to hearing from you.

All very best

Kirsty

[KASP6]

Hello!

There was piece on the itv news last night about Southampton hospital being the top performer in Europe for stem/bone marrow transplants.

Does anyone know where I can get the full list…?

Looking forward to hearing from you.

Best

Kirsty
07967 821729

[chris]

Hi Kirsty

So sorry to hear about your partner's diagnosis of MDS and his difficult decision about a stem cell transplant. Please see my post to Wendy and the link to our treatments page where your partner could get hold of 2 very useful books about stem cell transplant and post-transplant which may help him in making his transplant decision. Some centres may also require that you get counselling to aid you in your decision making. Hopefully you can find some posts on this Forum describing people's experiences of transplant and it might also be worth joining as a member of MDS UK so that you receive our monthly e-newsletter and could register to attend one of our patient support Zoom meetings where there is nearly always somebody who has gone ahead with a transplant. And, of course, our helpline is available and a talk to Sophie, our CEO, may be useful.

Choosing which centre to have the transplant is not easy either as it is difficult to find data on success rates. Transplants for some diseases may have better outcomes than others and some centres will take on potentially trickier transplants as they have more experience, so their results are likely to look worse. Here is a list I have found of the transplant centres in the UK:

https://bsbmtct.org/uk-transplant-centre-list/

You might be able to ask them about their success/failure rates but, at the end of the day, we are all different in assessing risk and knowing our own resilience in undertaking very challenging procedures.

Wishing you well. Let us know what you decide and how your partner gets on with his treatment - if he decides to go ahead.

Chris
Volunteer Coordinator and Local Patient Support Ambassador, MDS UK