Hi im new here. I have Acute myeloid leukaemia (AML).
I’m looking for personal experience of stem cell transplant as I have been giving just a 9% diffenerce to have transplant or not. I have read as much info medically about having stem cell treatment but I need a more personal viewpoint to help me decide. If I do go for transplant it will be donor.
1 Like
Hi @Miz I hope you’re doing okay, it sounds like a tough decision to have to make. You might find joining and reading through this thread helpful, Awaiting or considering or had a stem cell transplant, a place to share here - Going through treatment - Blood Cancer UK Online Community Forum
3 Likes
Hi @Miz a great big welcome to our forum.
I always think the unknow is so scary, especially anything medical, and a real dilemma for you.
I find that people around me will probably all have an opinion and be telling me what I ‘should’ do, but I think it has to be my decision in the end.
As @Alice_BloodCancerUK has already done is given you a link to some peoples realistic experiences and you will realise that there are many types of stem cell transplants including donor ones.
Your decision also depends on your personal circumstances.
Perhaps write down all your fears and questions and practicalities to ask at your next appointment.
Please do let us know how you get on and what you decide.
Really look after yourself and please do keep posting
1 Like
Hi @Miz and welcome to the forum. That’s a really tough decision to make! I can see you’ve been given some good advice and links to have a look through. I hope they give you some insights to help with your decision.
Please keep posting and let us know how you are doing X
1 Like
Thanks for link. Have looked at most of them and some bits are a great help. My sister has been my rock since being diagnosed on 19/05/23. Ive completed 2 rounds and chemo and in remission which is why I now have this decision to make.
1 Like
Hi @Miz,
Thank you for sharing this. We appreciate how difficult making this decision must be for you. Please don’t hold back on any specific questions or worries that arise during this period of ‘making your mind up’. Your team are very much there to answer any question you have.
Also do know that if it feels easier to talk things through, our helpline is open 6 days a week- 0808 2080 888.
Keep in touch, Lauran
1 Like
Hi miz
So sorry to hear that you have been diagnosed with Acute myeloid leukaemia (AML). I was diagnosed with it 4 times in 7 years and was basically kept alive hoping a donor could be found. 2007 they found one in Germany and I was given a 12% chance of it working. I knew if I wanted to have a chance of life I had to take it, I had no hesitation of saying yes. Nearly 16 years later I’m still here and it really wasn’t that bad. If I needed another one would I have it, you bet I would. Not everyone gets a donor don’t be scared, stay positive. Whatever you decide to do I hope everything turns out well. God bless x
1 Like
I’ve been diagnosed with Myelodysplastic syndrome (MDS)/Myeloproliferative neoplasms (MPN) with SF3B1 and Thrombocytosis (Essential thrombocythemia (ET)). I have been told by my two Oncologists that I will need a bone marrow transplant within the next 4 years or so.
I am very concerned about the procedure and Graft Versus Host Disease. I am always the one who has a reaction that no one has ever seen before, etc. My body shut down due to a Platelet infusion before a preventative double mastectomy and the surgery had to be cancelled. (I have the BRCA1 variant).
Anyway - I am very hesitant to go through with the Bone Marrow Transplant.
I know it has worked very well for others, and I’m so glad about that. Just feel like the one where everything will go wrong.
1 Like
Hi @BonnieS perhaps you have to gather your information, weigh it all up and when it feels right then make a decision that feels right for you.
There are lots of peoples stories on our forum.
If you would like to speak to the Blood Cancer UK support line the number is 0808 2080 888
Take lots of care of yourself
1 Like
Thank you so much Erica.
As the time draws closer, I’m sure I’ll be more open to the transplant.
Thank you for your support!
1 Like