Unable to have a stem cell transplant?

Hello
I’d like to hear from people who need/ed a SCT but have not been able to have one and who are still in remission?

I was diagnosed with AML in March, 3 rounds of chemo and my sister was flown over from Australia as my donor but a week before the transplant date I developed antibodies to her.
I have been told that an alternative donor is not an option due to my rare tissue type…

Therefore I am interested to hear from anyone who has bot been able to go to transplant but is in remission and doing ok?
Thanks

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Hi Corrina, I just cannot imagine what it must have been like to have had your sister flown over as a donor and a week before the transplant date you developed antibodies to her. I also wonder how your sister felt and would be interested to know how it was for you both emotionally?

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Devastating for us both… of course for me it just makes the AML so much more dangerous And for my sister, she was so disappointed that she couldn’t help me as she had wanted to do…

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Hi @Corrina firstly I am so sorry to hear this- I can not even begin to imagine how you must feel but would just like to say don’t give us hope as there are a couple of options here. You can be desensitised for the antibodies and can still use your sister (depending on how you respond to the desensitisation) or can campaign really hard to find a MUD. I am sure your doctors have spoken to you about this.

My fiancée has AML FLT 3 ITD blood cancer. We are currently in search of a donor as he has antibodies against both his sisters The search has been on going for 6 months. In a year we have completed 1 induction round of chemotherapy and 4 rounds of consolidation chemotherapy and he was also on oral target therapy. 4 months after the last chemotherapy he relapsed and definitely needs a bone marrow transplant in order to survive. At the moment I am doing a lot of research on using his sisters (I am speaking to a lovely experienced doctor in London about this) and trying to set up donor drives. Basically the way I see if we will find a way to give him a STC with minimal GVHD as possible- I will die trying to make this happen. So I am happy to talk to you any time and share any information I have found with you. Also someone suggesting this face book group called AML FLT3 survivors for extra support and advice which I have now joined- it could possibly also be helpful to you.

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Hi Corrina, thanks for sharing all of this useful information… AML is such a complicated disease and what you have posting is very interesting. Where abouts are you doing the donor drives?

The group you mention, is it UK only? I don’t have the FLT3 but am in ones for AML and find they can be unhelpful because when there are people posting crazy stuff from some countries such as strange treatments its just stressful… plus with the US having private health care they often have different attitudes to treatment.

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