Those of you who have followed my CAR-T journey, and offered such warm support, will recall my upset at having my admission in June cancelled. I wrote that I was to meet with my Consultant to discuss next steps, and following that discussion it was agreed that I commence treatment with Acalabrutinib. A bone marrow biopsy was to be performed after cycle one [July] and the results reviewed at Clinic in August. When I questioned my chances of proceeding with CAR-T I was informed my chances were 20% at best. Not at all promising.
My expectation attending Clinic in August was to receive the results of my bone marrow biopsy and to check that I was still tolerating Acalabrutinib, perhaps with a view to another BM in a few months time. However, I was told that following discussion at an MDT and with UCL and the Research Team I was to be listed for admission to proceed with CAR-T cell therapy, despite minimal improvement in my bone marrow. The news was completely unexpected, particularly in light of discussions back in June. I was obviously pleased but I needed time to process the decision. Following much discussion with the Team and my family I confirmed that I still wanted to proceed.
A number of tests have to be repeated and will be carried out this week. I will attend Clinic again on the 19th September for final discussion and to Consent again, following which I will be admitted on the 21st September.
The process has certainly felt like a roller-coaster ride but I am hopeful there will be no last minute glitches and I can really move forward with this exciting opportunity.
I shall write again following my admission. My best wishes to all.
Maureen UK
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Congratulations Maureen. I can’t begin to imagine how difficult this summer has been for you. I hope all goes well with your treatment. Wishing you all the best.
Gosh, Maureen, what an outcome. I pray and hope there are no more glitches. You must feel relieved, scared, worried but also hopeful. All the best from the bottom of my heart. Petra ❤️
What a tough time you've had. Here's to better times and more good news in the future 😊. I'm very grateful you keep us updated and for you being a pioneer for us CLL'ers in the UK. Very best of luck. Gillian
That's a good update! I wish you all the success in your exciting journey. Thanks for posting an update. I'll be the one cheering for you in the distance with the N95 mask. LoL
Wishing you much luck in your journey with CAR-T. The doctors must have hope that this can be successful since they have decided to continue this treatment for you. You have been through a tremendous amount, and this must have been an exciting surprise for you. I am certainly rooting for your success.
Maureen, I hope you are well, that you have had the CarT cell therapy at UCL and are making a good recovery. I don't believe you have posted since mid September.
My reason for writing to you is that I am likely to be offered Car-t when I see my consultant at UCLH tomorrow , subject of course to tests and evaluation. I'm currently on my last option drug, idelasib, having been through FCR, ibrutinib, and venetoclax, all with a modicum of success.
Any thoughts or advice from you would be very welcome.
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