Please read the house rules and keep this community safe for yourself and others.
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.
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
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