Please read the house rules and keep this community safe for yourself and others.
Failed graft - stem cell "top-up"
Hello, in Oct 2015 I was diagnosed with AML. I had my sct in March. After being unable to keep up decent Hb levels my consultant took me off Sorafanib and gave me a bone marrow test. I found out at day 116 that my graft has failed so I now need a second transplant.
I had a really tough time with my first transplant. Strong chemo and total body irradiation gave me really severe mucositis and gut bleeding problems. I had terrible GvHD of the skin, my eyes have been permanently damaged and the steroids have damaged my blood vessels so I'm in constant pain with that.
I'm pretty nervous about going through a second transplant (and hopeful about finding a generous donor or even going back to the original wonderful person who helped, selflessly the first time).
Has anyone else had a second transplant and able to give any advice please?
I had a really tough time with my first transplant. Strong chemo and total body irradiation gave me really severe mucositis and gut bleeding problems. I had terrible GvHD of the skin, my eyes have been permanently damaged and the steroids have damaged my blood vessels so I'm in constant pain with that.
I'm pretty nervous about going through a second transplant (and hopeful about finding a generous donor or even going back to the original wonderful person who helped, selflessly the first time).
Has anyone else had a second transplant and able to give any advice please?
Answers
Ajax
I'm sorry to hear of your problems and it sounds like you have had a really difficult time since starting with all this.
I know there are several others here who have been through a second transplant (and third in some cases) so hopefully some of them can comment as Ajaxbay has above. I can't imagine facing the prospect of going through the process again as it was hard enough the first time but I guess at least you go into it knowing what to expect which was always an unknown when we first have a transplant.
Is your next phase of treatment a full blown transplant or as the thread title suggests a 'top up'? There was another thread recently about topping up to give a transplant a jump start, and from what I recall it wasn't as tough a process so I hope that is the process you are destined for. I'll try and find the link as there may be some useful advice in there.
You have the appropriate name to beat it though and I hope you keep the warrior spirit and fight your way through it.
Please keep us updated as things progress.
All the best,
Steve
My name is Hayley and I am the nurse specialist in Anthony Nolan's patient experience team. I am sorry that you are having a difficult time at the moment, I cant imagine how you must feel after experiencing all the horrible side effects of transplant and then being told you have to go through it again.
You will need to confirm this with your transplant team but it is unlikely that you will have the same intensity of treatment as the first, in fact you might not have any chemotherapy at all. If the reason for the transplant is graft failure rather than relapse then the good news is that your disease is under control and you do not need any chemotherapy to get you back in to remission. However the decision on if and what conditioning treatment you will need will also depend on if you have the same donor as before so the really important thing here is to discuss this fully with your consultant. You will go back on immunosuppression for a while but they will be keen to start to withdraw that as soon as they can which means you will be at risk of GVH again.
Steve is right that there are several other patients on this forum that have had 2 transplants and I have also worked with patients going through the same thing. The prospect is daunting but the side effects are not always as bad as the first time and I do think that as you have been through it once before then you are more prepared and already know how to cope with some of the side effects. Find out from your transplant team what the treatment plan is and then you know what you are facing, it might not be as bad as you think.
Remember keep going, you have come through a tough period before and you will get there.
Keep us updated
Best wishes
Hayley
That really is fantastic news and must be such a relief to you. Lets hope any further treatment is unnecessary and you can continue your recovery unhindered and return to normal life. Keep watching those counts rise now and fingers crossed you can put this behind you.
All the best,
Steve