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Old Sat Mar 8, 2014, 01:23 AM
dfantle dfantle is offline
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Join Date: Jan 2012
Location: bellevue, wa
Posts: 150
Leung, I'm so sorry to hear your niece has relapsed.

Heading to transplant can be scary, especially without a full match. However if your transplant Dr's have a lot of experience with both stem cell and bone marrow methods, hopefully they will be able to answer your questions to help with your concerns.

As you mention, the advantage of the transplant for your niece is it should take care of the Trisomy 8 & AA.

Regarding the steroids, from what I've heard transplant docs prefer patients don't use them if they may need a transplant, unless absolutely necessary. This is because they lower immune function which can be problematic for potential fungal infections & this could delay transplant.

I too struggled with making the decision to move forward with my transplant but was running out of time to keep the donor who was my best match. This is because in the US, if the donor agrees to participate in the transplant, this is only guaranteed for 6 months. After this, their name returns to the full registry for others to be potentially matched to. I don't know of this is an international rule, however. This was particularly challenging because just before my transplant my numbers started improving. But as there was no guarantee they would continue to improve & I feared losing my donor, I decided to have the transplant.

One year later I am so happy I had the transplant. My SAA is gone and my transplant was successful. I pray all will go well for your niece as well.

Best wishes to you and your family
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Dena
Age 54; DX Heavy Chain (AH) Amyloidosis 6/10; AutoSCT 3/11; Amyloidosis remission 6/11; DX SAA 7/11; Horse ATG 3/12; Mini MUD SCT 1/13; Recovered from SAA 5/13 & feeling great
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