Hi
I know all circumstances are different but I just wondered how long it might take to find me a donor.
I was diagnosed with AML and MDS at the end of July 2021. I had 2 rounds of CPX chemotherapy, my blood counts took ages to start to recover after the second round so it was decided I shouldn't have a third.
My sister isn't a match for me, my daughter is a half match but I have antibodies against her so I need a donor.
In early December I was told I am difficult to match and there are no 10/10 donors on the registry but 9/10 would be investigated. On 10th January I was told a donor was found and I would be admitted on 2nd March, by the 17th this donor was removed from the register. I am really worried that there is no donor for me.
I have been told that 2 more 9/10 matches are being tested in more detail, any ideas how much longer I might have to wait? I hate not being able to make plans and feel I have spent the last 6 months in limbo. I'm not sleeping well because of the uncertainty.
Sorry for the long post, just need some hope x
hi again Closeburn and never apologise for long posts this is what this group is for.
The search for a matched donor is a neves time. For many year the aim was always a 10/10 match donor but things have moved on and mismatched donors are now just as successful as 10/10.
The tests that need to be done on a donor are very specific to ensure the donor is indeed suitable. Often people put themselves onto the donor register but once they are contacted and tested it's found that they actually cant go through with the cell harvest as they actually have underlying health conditions that stops them donating.
You can see that I have not put a 'timeframe' for finding a donor....... this is imposable. Over the years I have been on the site there have been folks who have found a donor with in weeks, months and yes even a year.
It's good that 2 9/10 matches are being investigated and do remember that there are people being added to the world wide register every day so lets look for good news to come your way very soon ((hugs))
Hi S,
Please don't feel like a fool - it's not your fault that you and the family were given dates to work towards.
I call my SCT journey my Magical, Mystery Tour.
Magical as to what SCT can do......... a Mystery as to how it works...... and a Tour as it never followed the path I would want it to follow. So false starts, changes in plans, getting all ready and it coming to a sudden stop just happens - this is SCT for you.
Do you keep a note book/diary?
I have been keeping one (well it's note books) since I started my journey 22 years back and during the crazy years especially leading up to and through SCT I kept it beside my bed including in hospital.
When my mind was in overdrive at silly-o'clock I would do a brain dump down on paper and close the note book....... there is nothing I could do at that very moment that could change anything so parking everything on paper helped the nighttime. Then I looked through the notes in the morning.
I could see trends that I just could not control. There were questions that need answers so I looked to get answers from my clinical teams......
Lets look for progress to be made soon ((hugs))
