T Cell treatment

[Marilyn1959]

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.

[2003UK]

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 [e-mail]. 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.

[Marilyn1959 in reply to 2003UK]

2003UK. Thank you so much for links to where I can go to get better understanding. Thanks also for thinking about me.

[HAIRBEAR_UK]

Hello Marilyn and welcome.

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

Nick.

[Marilyn1959 in reply to HAIRBEAR_UK]

Many thanks Nick. Info much appreciated.

[lankisterguy]

Hi Marilyn,

I believe you may be referring to CAR-T therapy:

lls.org/treatment/types-of-...

cancer.gov/about-cancer/tre...

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.

reuters.com/article/us-gile...

england.nhs.uk/2018/09/nhs-...

bloodwise.org.uk/community/...

Len

[Marilyn1959 in reply to lankisterguy]

Hi Len. Yes it is CAR T Therapy. My friend is in UK and is fortunate enough to be taking part in a trial under the NHS!

[lankisterguy]

The experience from patients ranges from very positive- a friend and founder of the CLL Society - Dr. Brian Koffman has a blog about his journey.

cllsociety.org/car-t-blog/

To the sad story of Lisa Minkove:

healthunlocked.com/cllsuppo...

patientpower.info/video/tri...

Len

[Marilyn1959 in reply to lankisterguy]

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.

[Lovinglife11]

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.

[Marilyn1959 in reply to Lovinglife11]

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.