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Post Transplant Lymphopherative Disorder

Positivethinking1Positivethinking1
in Long-term recovery
Hi there.. just wondering if anyone has any experiences of PTLD. Mum was initially dosgnosed with it 1 year post transplant and treated with rituximab. Unfortunately the EBV levels are back and mum has pain im her groin which we think is enlarged lymph nodes. She is booked in for more rituximab nxt week and waiting on a staging scan to see her things are. A little bit worrying and just wondered if anyone had experiences to share x
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Comments

  • Chiara_AnthonyNolanChiara_AnthonyNolan
    Hi there
    It seems like you've asked a tricky question here so I wondered if there was anything about PTLD that we could try and discuss with our medical team; try and get you some general advice? I'm really sorry to hear your mum if having such a tough time.
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  • Lavender2312Lavender2312
    Hi, I have just joined the group and seen your post. I had PTLD about 5 months post transplant. I was treated with rituximab and r chop - it was a pretty agressive treatment but I am still clear of the EB virus 6 months later. If I can be of any help let me know. Rob
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  • Dieseldrinker62Dieseldrinker62
    Hi Rob. I've not heard of PTLD before. Is it something that can occur in the early days post transplant or can it occur later?

    I had my transplant 2 years ago (anniversary on Saturday) and had some mild GVHD which seems to be under control now after 15 months of photophoresis. Hopefully I'm not going to suffer any more complications as I'm finally feeling as good as I did before all this began.

    Steve
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  • KristaLFKristaLF
    Hi Rob, I realize this post was quite a while ago and not sure if you still check this website, but I was wondering if you could tell me a bit more about your experience with PTLD and R CHOP. My boyfriend has just been diagnosed with PTLD ~5 months post transplant and he just had his first dose of R CHOP this past week. I believe they are planning on a minimum of two rounds. His white blood cells
    Have take a big hit and he is exhausted which I guess is to be expected. How many rounds did you have? Did it take a while for your counts to recover?

    Thank you,
    Krista
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