My wife is headed to SCT for AML.

FormerMember
FormerMember
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So, my lovely wife is headed for a SCT hopefully in about a month. She has AML with FLT3 mutation and has leukemia cutis. The cutis reared its ugly head just as she was about to begin her consolidation treatments. So that got cancelled altogether and they started her on Xospata to target the FLT3 in her skin. So far the cutis has almost completely faded and we are now talking with the transplant team.

We have been blessed with her brother being a match! No waiting for a donor search! YAY!

Now, we just have to pray the transplant takes. I know there can be lots of complications and I am nervous that she will be home with no immune system in the middle of a pandemic. I dread going back to work and risking bringing something home with me. Overall though, I think we have been lucky considering what she is dealing with. I can’t wait to get her better and to be able to offer support and hope to others facing this dreadful disease. 

  • Hi and welcome to the Community and so sorry the your wife is on the blood cancer rollercoaster.

    Although I was diagnosed in 1999 with a rare type of Skin Non Hodgkins Lymphoma I have had two Allo (donor) Stem Cell Transplants (June 2014 and Oct 2015) and achieved remission back in September 2016 for the first time in over 17 years.

    I was actually told back in 1999 that my condition was “incurable but treatable although I would never see remission......” so from my point of view, SCT has been a great success.... and as with your wife, my big brother was my donor, something that he never lets me forget lol.

    There are a number who have went through SCT having AML on the Mac Community.

    We do actually have a dedicated Stem Cell Transplant group where all our blood cancer folks hang out and support each other on the SCT Magical Mystery Tour.

    Follow the link I've created above, join the group, then hit ‘start a discussion’ and you are ready to go.

    You could then copy and paste the information from this first post into your new discussion or you can just join in with existing ‘Discussions’ by clicking on 'reply'.

    SCT for some can be a bumpy journey but is all do-able but it will help talking with others who have walked the walk.

    When you have a minute you may want to start your profile as this helps others understand a little about you and your wife’s journey and save you repeating the same stuff over and over just Click to see how to add some details to your profile...... and you can hit our community names to see a little about our rollercoaster rides.

    Always around to help and answer questions.

    Mike (Thehighlander)

    It always seems impossible until its done - Nelson Mandela

    Community Champion Badge

  • Hello Travt, I was diagnosed with AML with the FLT3 mutation and another mutation. This was back in 2014 we lived in France at the time but the procol  is similar. Three rounds of chemo and a week of conditioning I had an allo transplant. Staying positive (I know its difficult) and don't believe what you read on Google is the best way forward. It is difficult but preparation for life after the transplant can start now. My family deep cleaned the house when I was in hospital, we fostered out all house plants and stored anything that could be used to trap bacteria (we had two dogs and I drew the lines at fostering them out). In some ways it may well be easier during the pandemic as most people are a lot more careful now. Although i didn't stop all visits by friends I did stop them if they had coughs and colds and always wore a mask when I went out so the pandemic has been more of the same for me. You will need to be extra careful and change/shower before seeing her when you come home from work. So 6 years on I am proof it can be done. You don't say how old she is. I was 59 when diagnosed. it will be difficult and its a rollercoaster but knowing that it can be done will get you through. You need to get a support system for yourself too. 

    Good luck and stay in touch

    Jackie

  • FormerMember
    FormerMember in reply to Jackie A2

    Thanks Jackie! It’s great to hear you’re doing so well after SCT. My wife is 42. She keeps getting told she is too young for AML, but here it is. We were somewhat used to keeping away from others as much as possible because she was already taking a medicine for psoriasis that lowered her immune system. So we are just stepping up our established habits. I definitely think the fostering of plants is a good idea.  Like you, she would never go for fostering our 3 dogs!

  • FormerMember
    FormerMember in reply to Thehighlander

    Thanks Mike! I updated my profile and will definitely look at the SCT group.

    Glad to hear your success story. It gives me hope. 

  • This can be a bumpy old ride - for everyone.

    I can testify to my sign-off tag sayI got “it always seems impossible until it’s done....” this is so true and yes, there is always hope until there is none.

    Mike (Thehighlander)

    It always seems impossible until its done - Nelson Mandela

    Community Champion Badge