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Hello from me!

Hi there!

My name is Jet, I'm 52 and I live in Nottingham. I have myeloma, which relapsed only five months after an autologous stem cell transplant (my own cells). After second line treatment, I had an allogeneic transplant from an unrelated donor. That was two years ago. I have just celebrated my two year anniversary.

I am in remission, but having ECP (extra-corporeal photopheresis) treatment for moderate Graft versus Host Disease (lungs, guts, eyes, mouth, scleroderma/skin). I'm doing well, with a good quality of life, but I have slight mobility issues and breathlessness. I have had excellent support and care from the Haematology team at Nottingham City Hospital and would highly recommend it as a centre for treatment.

I volunteer with Anthony Nolan, for Register & Be a Lifesaver - going into schools and colleges to give talks about stem cell, organ and blood donation, as well as helping with recruitment events. I've also enjoyed helping with a few other projects and campaigns. I think Anthony Nolan is a brilliant organisation and I have found all the staff I've met or spoken with to be helpful, warm, friendly and professional.

Comments

  • Hi Jet and welcome to the forum. Congratulations on your second anniversary.

    I'm also having ECP at Nottingham, and have to say the team there are great. My GvHD is just in my skin which is an inconvenience more than anything. My skin gets very dry and itchy but the ECP treatment seems to be having an effect.

    Good luck with your treatment and perhaps I'll bump into you sometime in Nottingham, if I haven't already.

    Steve
  • Hi guys, glad things are going well for you. It's brilliant that you're volunteering for AN, I co-ordinate the Dorset Friends group and have had fantastic support from all the team. Looking forward to chatting more on here, it seems to be really taking off!
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