Day +97 Skin GVHD

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Hi there,

I’m currently day 97 post allo SCT for T cell Lymphoma. Its. Have started with a faint red pinprick style rash on back. Not painful or itchy. Anyone with experience of early GvHD - how did it present? I’m now off Ciclosporin so hoping it’s the donor cells activating rather than return of my disease. Will see my team next week and inform them.

Many thanks. 

  • Hi  and a warm welcome to this corner of the Community……. I am Mike and I help out around our various Blood cancer groups. 

    I had 2 Allograft (donor) Stem Cell Transplants…. the first in June 2014 with the second in Oct 2015 for my 2 types of T-Cell NHL…… (Cutaneous) T-Cell Lymphoma (first diagnosed 1999) and my aggressive Peripheral T-cell lymphoma not otherwise specified (PTCL-NOS) (diagnosed late 2013) so I most definitely appreciate the challenges of this journey rather well.

    Following my second Allograft SCT I had various rounds of GvHD……. this is taken from my timeline diary……

    Day 85 - 196..... skin GvHD so Cyclosporin was continued and slowly reduced over time

    Day 98 First Chimerism 39% Donor

    Day 112 First DLI

    Day 133 Chimerism 42% Donor

    Day 154 DLI

    Day 183 Chimerism 40% Donor

    Day 196 Cyclosporin stopped

    Day 224 Chimerism 38% Donor

    Day 245 DLI

    Day 275 Chimerism 43% Donor

    Day 284 GvHD in bone marrow - Blood transfusions for three months

    Day 304 DLI

    Day 328 BMB

    Day 345 Chimerism 60% Donor 

    Day 345 Remission and NED (No Evident Disease)!!!!!

    (Could never understand this one)

    Day 401 Chimerism 55%

    Day 422 DLI

    Day 478 Chimerism 65%

    Day 562 Chimerism 68%

    Day 618 Chimerism 59%

    Day 644 First time in 3+ years my Whole Blood Lymphoid and Myeloid Lineages are 100% Donor

    Mike (Thehighlander)

    It always seems impossible until its done - Nelson Mandela

    Community Champion Badge

  • Thanks Thehighlander! Quite a journey you have  had. 

    can I ask what your did your skin GVHD rash  was like during days 85- 196 if you can recall?  

  • I was given steroid creams and the very slow reduction in the Cyclosporin allowed my all new Immune system get up to speed and get on with its job of controlling stuff like this 

    Mike (Thehighlander)

    It always seems impossible until its done - Nelson Mandela

    Community Champion Badge

  • sorry…… it initially looked like a red rash but developed into Psoriasis like dry skin….. this was concerning as it was very similar to my rare skin NHL.

    Mike (Thehighlander)

    It always seems impossible until its done - Nelson Mandela

    Community Champion Badge