Waiting for Stem Cell Donor

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Hi Everyone

I am just wondering what experience people waiting for Transplant regarding finding a Donor. 
I have been told I am on the “ active list “ for a suitable donor , I’m so anxious wondering how long the process takes and will there even be a suitable donor for me ?

I am struggling at times to cope with the anxiety and constant butterflies in my stomach. 
Would love to hear some positive accounts from people who have gone through this Blush

Thank you 

  • Hi  and a warm welcome to this corner of the Community although I am always sorry to see folks joining us. I am Mike and I help out around our various Blood Cancer groups but also in this group

    I see from your profile that you have AML. I was diagnosed way back in 1999 at 43 with a rare, incurable but treatable type of Low Grade NHL eventually reaching Stage 4a in late 2013 so although my Blood cancer  ‘type’ is different I do appreciate the challenges of this journey rather well especially the Stem Cell Transplant journey as I have had 2 Allo (donor) SCTs….. with cells from my big brother.

    How long have you been on the ‘active list’?

    The search goes world wide and it does take weeks even months to find and line up a donor.

    The progression in treatments now means that you don’t have to have a perfect 10/10 match as many people have had 5/10 matches and had successfully transplants.

    Its a nerves time but we are here to chat and support you ((hugs))

    Mike (Thehighlander)

    It always seems impossible until its done - Nelson Mandela

    Community Champion Badge

  • Hi Mike

    Thank you so much for your reply. I was only told this week that I am on the active list so maybe it is early days in terms of the search. 
    I’m just so anxious that a donor might not be found as my Consultant has said I do need a transplant. 
    I usually cope well , I have been trying breathing exercises, haven’t quite mastered them yet , find it hard to switch off. 
    Thanks again Mike Blush

  • I totally understand the stress of this all, back in late 2013 I was told that a successful Allo SCT was my only hope and if it did not work I had a few years on the clock.

    I was very fortunate that my big brother was a good match but the world wide register is huge.

    My first Allo (June 2014) did not work but this was expected as we were using a new conditioning treatment (with no chemo) to kill my immune system in the hope I would recover quickly….. I did recover quickly but the graft failed within 6 months so I went back in Oct 2015 for a final roll of the dice.

    You can see my story using the link at the bottom of my posts.

    This PDF will help you understand donor stem cell transplant (allogeneic).

    I have talked with many people who have went through SCT and all the scary information that they receive from their consultants actually don’t happen but consultants have to highlight the worst case scenario.

    Happy to answer any questions or just to chat ((hugs))

    Mike (Thehighlander)

    It always seems impossible until its done - Nelson Mandela

    Community Champion Badge

  • Thanks so much Mike , I will have a good read of this info.  Have a lovely weekend Blush

  • HI Fifimac

    My wife is recovering from AML diagnosed back in 2018 and had to have an SCT in August after relapse in 2020.

    Luckily her sister was a doner match at the time 

    As Mike has said, the search does go Worldwide to find you a suitable doner, once this has been matched the process will begin fairly swiftly. 

    Stay strong and positive, your team will do all they can to get you to a good place, I'm sure the doner will be found for you soon.

    Please keep this forum updated on your progress, I found it incredibly helpful as a carer going through this process with my wife. There are many others who contribute here who have gone through the process also and share experiences offering tips and advice on Many aspects to of the SCT journey.

    Wishing you a speedy and successful Search for you doner xx

    FULHABOY (Nick)

  • HI again Filimac

    Just read your profile

    My wife was 64 when first diagnosed in Oct 2018 and she too was NPN1 positive and FLT3 negative, 3 rounds of chemo followed by treatment called Flad ida as the AML wasn't completely eradicated. Relapsed after 20 months before her SCT August 2021.

    Now almost 18 months post transplant and doing great, it a long and bumpy road to travel but you will get the best treatment available to you. Keep positive and stay strong, you will get through this. xx

    If you have any question you would like to ask, please don't hesitate, I will try and be as helpful as I can.

    FULHAMBOY (NIck)

  • Thank you Nick for your very informative reply. So happy to hear that your wife is doing well after the transplant. It’s very encouraging to read this. I will certainly keep you updated on my progreBlush. I know it’s not going to be a quick fix. Thanks again, pass my good wishes to your wife too Blush