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Lymphocyte top-up
I'm 139 days out from SCT for AML from an unrelated donor.
My bone marrow is functioning well and my myeloids are showing as 100% donor.
However my lymphocytes are only 30% donor and docs plan to give me a top up next week to push the levels up. Gvhd is cited as a potential risk and given that I've avoided it to date I am terrified I will have it this time.
Any other forum members had a lymphocyte top up and did it work??
My bone marrow is functioning well and my myeloids are showing as 100% donor.
However my lymphocytes are only 30% donor and docs plan to give me a top up next week to push the levels up. Gvhd is cited as a potential risk and given that I've avoided it to date I am terrified I will have it this time.
Any other forum members had a lymphocyte top up and did it work??
Comments
My name is Hayley and I am the nurse specialist in the Anthony Nolan patient experience team, thank you for posting on the forum, I am sure there will be some support and advice from the other members regarding DLI infusions or 'top up'. DLI is commonly used for low chimerism and works very well to resolve the problem.
GvHD is a necessary part of transplant recovery, graft versus host means that the new stem cells (graft) although very closely matched to you will have minor mismatches and because of these can recognise you (host) as foreign and so causes a reaction. This sounds a bit scary but it is actually a good sign, it means that the new immune system is strong. When you get GvHD you can also get GvL which is graft versus leukaemia effect, this means that new stem cells can also help fight against any disease. So when we see a strong reaction in GvHD we are encouraged that the new immune system is working well and that the GvL will also be helping to keep you in remission. If you don't get GvHD that doesn't mean the transplant hasn't worked or that you are going to relapse, its just that some patients can get through a transplant and still do well without any GvHD.
As you recover we measure your chimerism, which tells us how much of the stem cells in your bone marrow are your donor and how much still remains of you. Ideally we want you to be 100% donor or thereabouts, in your case you are nearly there but your new stem cells need a bit of a push in the right direction. The donor lymphocyte infusion will hopefully do this, it is a very simple procedure and is done as an outpatient and you are right the most likely side effect is GvHD. The reason we want you to get a bit of GvHD is because we need to see this reaction from your new stem cells to show that it is strong. It is this reaction that can then push your chimerism back up to 100% donor. Again if you do not get GvHD it doesn't mean that the DLI isn't working, DLI without any GvHD can still increase your chimerism.
The main concern with GvHD is that the medical team controls the symptoms, and the symptoms can be a skin rash, sore eyes, sore mouth, diarrhoea or deranged liver function. Your transplant team will be closely monitoring you for any signs of GvHD and will act accordingly. If you get any of these side effects and they are persistent you might go back on immunosuppression and/or steroids to get it under control but you might also not need too, it will depend what level of GvHD you get.
Although its a bit daunting thinking you might get GvHD, if you prepare yourself with knowing what the symptoms are and keep your transplant team well informed of any symptoms that you might develop you will be fine. Anthony Nolan have An Essential Guide to GvHD booklet and also The Seven Steps: the next steps which has lots of information, you can download from here: https://www.anthonynolan.org/sites/default/files/903PA_Mini_GvHD_lores.pdf https://www.anthonynolan.org/sites/default/files/Next_Steps_Digital.pdf
I hope it all goes well and keep us informed of your progress.
Best Wishes
Hayley
The infusion itself was pretty easy, make sure you have someone to take you home as they give you a load of anti histamine. The preservative smells bad for a few days and made me feel a bit nauseous at the time of infusion, but some extra anti sickness sorted that, all pretty easy really!