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Hi everyone,
Following information from UK Government and the publication of NICE guidelines, we have updated our advice on the coronavirus for people who have received or are waiting to receive a stem cell transplant to treat their blood cancer or blood disorder. Read our coronavirus guidance here: www.anthonynolan.org/coronavirus

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Hi all

My name is Kevin and after having Hodgkins Disease on and off for 31 years i have finally found this helpful site lol. The NHS really should point us here for info !

I am now shortly starting on a medical trial immunotherapy drug ( yet to find out its name ) as i have relapsed for the fourth time.

I have had an autologous bone marrow transplant and a stem sell autologous transplant and now should i get into remission again i am being lined up for a possible allogenic transplant. I have had my limit of chemo and have also had radiotherapy over the years.

I am interested to see if their is any one else out there in similar circumstances to me, would be handy to talk to someone else who has been through similar stuff . I dont know anyone who has survived 2 transplants long term.

regards
Kev

Comments

  • Hi Kev and welcome top the forum.

    You're right about this being a useful forum and I'm sure it is invaluable to those of you going through transplants. I wish it had been around when I had mine over 3 years ago. Every haematology unit and transplant unit should have the details to pass on to patients!!

    You sound like you have had a lifetime of treatment if you've been diagnosed 31 years ago and I guess you would like a cure once and for all, which is hopefully what an allogenic transplant will give you. I know there are others who have had multiple transplants here and can give you some insight into what it entails and what the long term prospects are.

    I hope someone here is able to give you some assurances and wish you well with your treatment. Please keep in touch and let us know how things go.

    All the best,

    Steve
  • Hi Kevin,

    My name is Hayley and I am the specialist nurse in the Anthony Nolan patient experience team. I am sorry that you have had such a difficult time with Hodgkin's disease, 31 years is a long time to have to cope with it. You sound like you have had more than your fair share of hospital appointments, treatments and the highs and lows of remission and relapse.

    I hope you find this forum helpful, I think it is a great resource for support and advice and I am sure that you will receive some advice from others that have had similar treatments and are in similar situations. I try not to get too involved because I believe the best advice comes from patients and families who have experienced it, however I sometimes will add some medical advice.

    I hope the treatment goes well and please feel free to get in touch if you have any questions.

    Keep us updated with your progress.

    Best wishes
    Hayley
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