[sunflowersParticipant]

Hi all

I’ve been reading with interest about results and clinical trials for Car-T, in the hope this may be an option for potential future treatment routes. (SCT has been declined my partner and he’s 50, so ive been researching other opportunities, Car-T and BiTES)

I located clinical trial info at University college London who are currently looking for Myeloma patients to undergo Car-T treatment (highlighting here for anyone keen to know about this)

Then this week Sheffield teaching hospital announced it had become a Car-T therapy centre (NHS) to treat large B cell lymphoma and leukemia, i believe they are one of 11 centre rolling the treatment out…this is great news for all waiting for treatment.

Has anyone any further news on the myeloma side of things? Anyone at MyelomaUK aware of any developments ongoing in the background as i know you are all very proactive. There have been some very positive news stories of how treatment has gone for those that have been receiving Car-T in America, I came on anticipating seeing posts on the myeloma forum….but ive not located anything, so thought it okay to ask?

Thanks in advance
Sheena

[mulberryParticipant]

Hi Sheena, sorry no one has answered so far.
My understanding is that CAR-T is now an approved therapy for leukemia in children that has failed to respond to chemotherapy in uk, and that major transplant centres in UK have been designated CAR- T hubs for more general use of the procedure. Approval for it’s use against myeloma was anticipated late last year, but things went quiet when there was world wide difficulty obtaining the fluid preparation that the T cells are grown in. This was, and I think is, severely limiting the CAR-T treatments going ahead in USA and other countries. I wonder if this is causing the delay in UK?
Drs at the hospital I attend (which is one of the designated hospitals, with at least some designated staff) , who were talking about CAR-T last year, are now talking to MM patients about the potential of BiTEs rather than CAR-T, at least in the first instance.
I think this is a question to ask your husband’s consultant.
Best wishes
Jane

[sunflowersParticipant]

Hi Jane

Thank you for your invaluable feedback and insight, it’s much appreciated. I completely understood the approach for the NHS to proceed with Leukemia patients in the first instance, I’ve been inspired by the amazing courage and progress of these young patients, their results have been heartwarming and I can only imagine the concerns of the families whilst waiting for a donor match and the hope that Car-T may be offering.

Thank you for the insight re the supply issues, that may explain the progress of roll out.

It was yourself that provided insight to BiTEs…so I’ve been extensively reading around those developments too (thank you).

Unfortunately my partners consultant openly admitted she has “reached the limits of her knowledge around Myeloma” as she is a haem specialist not myeloma, so this month we are back at City hospital Nottingham to speak with the stem cell team, so I really need to feel prepared to ask about any routes of further treatment I don’t want him to keep being blocked out or slip through the net for possibilities.

If I hear or find out anything further that may help the community I shall puck up this thread once more…thanks once again and all the best for your journey.

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