Hi all, hope everyone is doing ok. My Dad got diagnosed with Acute myeloid leukaemia ('AML') in November 2024, had three rounds of chemo followed by a donor stem cell transplant (9/10 match) in July last year, 2025. We were hoping by now, 10 months on, he would be well on the road to recovery but he really has no quality of life. He is plagued by Graft-versus-host-disease ('GVHD') of the skin, which covers around 80%
of his body. He is also struggling with his left foot in that it’s very painful, swollen and he can’t weight bear on it. He’s on constant creaming up twice a day, no improvement really. He is on rezurock in the hope that helps the Graft-versus-host-disease ('GVHD'), he has been on it around a month, no change yet.
Has anyone else suffered with Graft-versus-host-disease ('GVHD') of the skin following a transplant and can give us all any hope that my Dad will get better?
So sorry to read about your Dad’s issues post stem cell transplant. It sounds horrible.
I had a donor transplant April 2025 who was a 9/10 match.
Fortunately Graft-versus-host-disease ('GVHD') hasn’t been an issue for me so far. The Transplant Team were reminding me at my one year review what to look out especially in terms of the skin.
I’m hoping your Dad is being well supported by his clinical team.
Hopefully some others on the forum will be able to share experiences.
I think that everyone who has a Stem Cell Transplant,and possibly organ transplants too?,gets Graft-versus-host-disease ('GVHD') to a degree.I had a Stem Cell Transplant due to a rare T Cell Lymphoma called Mycosis Fungoides and got limited Graft-versus-host-disease ('GVHD') and it caused rashes but MF also causes the skin to go red too so they had to biopsy it lesions to find out what was in them and they were a mix of Graft-versus-host-disease ('GVHD') and MF.The Graft-versus-host-disease ('GVHD') rapidly went after a few months but to counter that the Mycosis Fungoides rapidly relapsed covering about 30 percent of the body in about 3 months.So now it’s PUVA,a mild radiation type treatment, and Acetretin to try to reduce the lesions.
We are so sorry to hear about your Dad’s diagnosis of Acute myeloid leukaemia ('AML') and his Graft-versus-host-disease ('GVHD'). We can imagine this is a difficult time for him and all the family.
If you would like to talk through any of this with our support nurses please get in touch on 0808 2080 888 or support@bloodcancer.org.uk.
Please do keep the treating team updated on how he is doing, there are other medications and treatments that sometimes they can offer to provide some relief from this if he is finding the current one is not working. Again do tell the team about how he is finding this so that they can aim to support him as best they can.
Our colleagues at Anthony Nolan have a guide on Graft-versus-host-disease ('GVHD') that may be useful AW_4059PS_Patient_Services_Guide_-_GvHD_-_WEB.pdf and can help when speaking to your dad’s treating team.
