AML long term prognosis

Hi Sam

I am sorry to hear what your dad and yourself are going through. I was diagnosed in April 2018 at nearly 61 years old. 

I had three rounds of chemo and was in remission till February this year when they spotted the leukemia returning.

I had another round of high dose chemo to keep me in remission followed by a bone marrow transplant from an unrelated donor end of May.

Its been a tough journey but I am recovering slowly and starting to get my life back.

None of my siblings were under 65 and they did not match anyway so my donor was from the USA. I would have thought your medical  team would already be looking for a donor for your dad. I was treated in Cardiff UHW hospital.

Mark

Hi  and a second welcome to the Online Community, although I am sorry to see you finding us and so sorry to hear about your dad.

As Mark has said Stem Cells don't need to come from a sibling as there is a world wide register for this very purpose.

I have lived and been treated for a rare type of T-Cell Lymphoma for 20 years but did have two donor Stem Cell Transplants (SCT) in 2014 and 2015. A point of note - its very seldom Bone Marrow Transplants are done now but Haematologists use the old term when they are talking about Stem Cell Transplants.

My donor was my brother and at the time of stem cell harvest he was 66 and 67.

Is your dad being seen by a national Stem Cell Transplant Unit...... as you have some questions to ask to get a clear picture.

We do have our dedicated Stem cell transplants for blood cancers group where we all hang out and support each other.

Your 'how long to return?' question is a total guess and in these circumstances, as we are not experts, we would not do that. But we do have Caroline - Macmillan Heamatology Nurse and Jane - Stem Cell Transplant Nurse so you could post questions to them but please allow 2 working days to get a reply as they do this as a Volunteer.

When you feel up to it try putting some information in your profile. This really helps others when answering. It also means that you don't have to keep repeating yourself. Just click on YOUR username, select 'Edit Profile'. Put as much or as little in your profile and you can amend it at any time - you can see members profiles by hitting our forum names.

Always around to help out.

Thank you so much for your responses. My dad is based in South Africa. His doctor has said he won't consider anyone other than a male sibling as it has to be a 100% match. Due to his age anything other than this will be too risky. Does this sound accurate? He is seeing the doctor again on Thursday and I've also thin to find out the name of the drug that helps to prevent the leukemia returning as that seems to be the next option although the costs are extortionate.

Hi again,

We are not experts and only have our own experience to look back at, so can not say if what your dad’s Doctors is saying is accurate.

But Stem Cell Transplant from non related donors had been done for over 50 years and over the years I have talked with many, many people who have had very successful Allo SCTs with cells from donors and some of these were not perfect matches and it still worked.

At its basic level a person needs stem cells from a healthy person – with the same tissue type – to replace and repair their own damaged cells.

About 30% of people in need of a Stem Cell Transplant can find a suitable donor in their family…….. but the other 70% rely on a stranger to save their lives.

This is a link to The Anthony Nolan Trust, a UK charity that matches donors to people who need a Stem Cell Transplant…… but as we have said there is a World Wide register.

Is your dad being supported in a top Cancer Hospital that also also specialises in Stem Cell Transplant?

As I said before, you could post your questions to Jane - Stem Cell Transplant Nurse as she is an Expert working in the field…… please allow 2 working days to get a reply as they do this as a Volunteer

Always around to help out.