Hi, my good friend, who had bowel cancer ten years ago, was unfortunately diagnosed with ALL about six months ago. He was in remission following chemo, then had stem cell transplant. About a month afterwards things went pear shaped quickly. The leukaemia was back with a vengeance! He is now having T Cell treatment.
Has anyone gone through this treatment regime either as patient or relative who can give me a personal insight as to what I might expect during and as a result of T Cell treatment?
Many thanks.
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Marilyn1959
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Hi Marilyn, sorry, I cannot help with your medical questions, but The Leukaemia Care helpline on 08088 010 444 Mon - Fri 9am - 4.30pm or support@leukaermiacare.org.uk. As a good friend you might also need support as you are the unsung hero, it can be an isolating, draining role so please do look after yourself.
I myself cannot share experience of this therapy, but in addition to the information 2003UK has provided about the helpline we do have evening nurse consultations Thursday and Friday with A clinical Nurse Specialist with experience in therapy delivery in this area, You could call her on the helpline 08088 010 444 between 7 and 10 this evening to connect for insights
There are numerous clinical trials in the USA and elsewhere for CAR-T therapy, but so far it is only approved for a few very aggressive lymphomas, and is extremely expensive- up to $500,000 for treatment.
Hi lankisterguy. Thank you so much for the links. I am halfway through Brian Koffman's blog which is both insightful and So well written. Thank you for guiding me to it.
Hi Marilyn, I was diagnosed with ALL 7 years ago and underwent intensive chemotherapy and was on the T cell trial. The treatment was very tough and it took a lot out of me but with positive attitude and much support from my family and friends and of course the amazing care from doctors, nurses and nursing assistants I pulled through. Be strong keep positive and offer as much support as you can but without taking away any independence! I found not giving up gave me more drive to survive.
Hi Lovinglife 11. Thank you so much for taking the trouble to respond and share your direct experience that has had such a positive outcome, despite the arduous journey. It gives me renewed hope for my friend's survival. He, like you, is a fighter. I know all cases are unique, but hearing from a CAR-T treatment survivor has really given me the lift I needed. I will heed and thank you for your advice.
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