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advice on greater fatigue, rash and low immunoglobulin

I am 6yrs on from SCT, last 6 months I have had, Covid, flu, Covid flu and flu. Recently have broken out into a rash that looks like graft versus Host. Immunoglobulin levels are low. Sought advice from GP who is working hard

Answers

  • Hi Will,
    Sorry to hear you've had a prolonged period of illnesses and thank you for reaching out to the forum for some advice.

    To date, there is limited literature and evidence about COVID-19 being a potential trigger for GvHD.
    We do know that infectious triggers or reactivation of viral infections may contribute to an inflammatory environment to stimulate GVHD.

    If you believe you are developing GvHD signs/symptoms I'd advise that you reach out to your BMT team and make them aware. Your GP will be an important support but will not be a specialist in managing GvHD by getting it reviewed and monitored by your BMT team you'll have the best opportunity for early treatment, if required. You may not need to go in for an appointment, if it's a rash they may ask you to send a picture in via email initially.

    I hope this has been of some help to you.
    Kind regards
    Rachel

  • Rachel. Sadly I did contact the BMT Team who told me my Cancer is back. I have just completed 4 cycles of Azacitidine combined with Venetoclax and I am in remission. My Consultant at MacMillan AML UCLH is enquiring if there are enough T cells from my Transplant 7 years ago to do a DLI or whether they need to contact you and ask to contact donor. Can you tell me the exact procedure, time, method of infusion, post infusion tests as I am somewhat in limbo at the moment. many thanks for any articles or information to inform a worried relapser. Best Will

  • Hi Will
    I'm very sorry to hear your update but excellent news that the chemo has worked and you're in remission. I wondered if a call might be easier to talk through all the questions you have around DLI? If you wanted to email me at lead.nurse@anthonynolan.org we could set this up. Alternatively you could call our enquiry line on 0303 303 0303 and ask for Rachel.

    You may have already looked at the information we have on the website about DLI, here is the link if not:
    https://www.anthonynolan.org/patients-and-families/recovering-a-stem-cell-transplant/what-a-donor-lymphocyte-infusion

    I hope to hear from you via the access points above.
    Kind regards
    Rachel

  • Hi Will, I am pleased to hear you are in remission again after relapsing. My son is also waiting for his next DLI. The reserves in the lab at his hospital have run out and his medical team are contacting the donor again, via Anthony Nolan, to request further donations. Have you had any updates about yours yet?

    Kind regards Valerie

  • Valerie thank you so much for commenting. I wish you luck with the response from donor. I am currently waiting to hear if UCLH have supplies from 8yrs ago and if not I am trusting that my donor will be prepared to top up with his T cells.

    Otherwise it looks like a lifetime of Azacitidine and Venetoclax. Something that i will have to get my head around. Many thanks and good luck Will

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