Finding a Donor

Good morning , Interesting questions that will get far ranging answers.

For me. we were surprised when my brother came back quickly as a 10/10 match.... I think it's less than a 20% chance of finding a blood related match and even then it took a few months for everything to be put in place.

The next step when no blood relation match are found is putting out a search world wide...... this can take some time, weeks even months as there is a lot of matching criteria has to be done before candidates can be presented.

With the COVID19 virus doing it's rounds the matching system will be slower, even in normal times this is not straight forward so this may take even longer and even when a match is found these folks will have to go through a set of tests including a COVID test.

His team will do what needs to be done to keep him in a position for going forward for SCT and if this requires more treatment then it would be done.

What are his team saying at the moment?

((hugs))

Hello Highlander,

Drs are saying this is his last treatment option now, we have undergone everything there is to offer at the moment. His cancer just keeps relapsing quickly. 

He can have a Max of 4 x IVE Chemo so (12 weeks total - 10 left) to find a donor and do all tests/checks and put everything into place to do the transplant. 

Hoping we find a donor soon And it’s a good match?  

If this doesn’t workout then it will be - any new trials? (very limited for his type of cancer and at the current minute) or more palliative. 

Diamond Girl 

I didn’t want to just press the ‘like’ button to acknowledge I have read your reply.

Let’s look for all the dots to get connected and way forward found, incidentally, there have been a few folks go forward with a not so perfect match - even 5/10 and have done well.

((hugs)) 

Hi,

Really - 5/10!! Wow that’s a very low side score and surely a much higher risk to the patient for GVHD?.

I could do with reading their stories and see what they have to say. Can you remember who they were? 

The dr said a slightly mismatched score would be acceptable he mentioned 9/10 or 8/10. 

Diamond Girl 

Good morning

So you made me go on a search to make sure what I was saying was true.

Yes a 5/10 match SCT is called a Haplo DCT but it is from a related donor.

You can use the search tool near the top to have ‘key word’ search round the threads.

I found one post that said Haplo SCTs are rather common in France, some hematologists even say that it's better to have a Haplo than a 9/10 unrelated donor.

So may not be an option but we’re your team looking at that option as a fallback?

GvHD is a peculiar animal with folks having no issues, like in my first Allo SCT but full on following my second SCT with the same donor cells.

Fingers crossed x

Hi Diamond Girl.

I'm lucky in that my younger brother came back a 100% familial match so it was definitely smoother than expected. He was tested when he came to visit me in hospital and his blood work came back in a few days.

I was actually meant to have my bone marrow transplant in April, but I caught covid, beat it, and now am back on track for a rescheduled procedure in mid-June.

I've been put on some oral chemotherapy to keep me ticking over until then, but only low doses of methotrexate and mercaptopurine.

I was diagnosed with ALL in August 2019 so things have moved relatively quickly I think, I'm just hoping that nothing else gets in the way of the transplant.

David.

Hi , I see this is your first post so welcome.

Hi David, 

Thank you for replying.

Sorry to hear you had coronavirus but so pleased you beat it!!

Great news about your brother being a match and hope your transplant happens in June. 

If you give a bit of info on your profile it helps to understand your story. 

We are just waiting to find a donor now and hoping we get one soon??? 

ps welcome to the macmillan blog, I find it useful because I have so many questions and I find a lot of info on here. 

Diamond Girl  

Morning

I had an allo back in 2013 for ALL. From memory from when they told me I needed a donor to when they said they had a couple of possibles was 4-5 weeks. Of course they may have started the search before they told me!

My donor was a 9/10 match as I have an unusual tissue type to match apparently! I was due to have the transplant Jan 31st 2013 but this was delayed until the 31st May 2013 as I reacted to PEG asparginase and had a severe bout of acute pancreatitis.

Once I had got over the pancreatitis (about 6 weeks from mid Jan) I was on oral chemo to keep me ticking over. Transplant was end of May and went well. More info in my profile. 

Fingers crossed they source a donor soon from the databases.

Hi Paul,

Great to hear your Allo was a good success!! Long may it carry on too....

You didn’t have to wait too long then for a donor I know you had a few problems and there was a delay but that wasn’t because of the donor.

I’m really hoping we have the same success in finding a donor and with the future transplant success for my husband. This really is the last option for him now. 

Thanks again 

Diamond Girl