POST 6 CAR-T cell therapy

[casanova]

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

[Alex830]

Very happy for you. Good luck on this journey.

[HopeME]

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.

Mark

[Tangolover]

Best wishes to you!!

[Poodle2]

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 ❤️

[spi3]

You will be in my prayers for a speedy recovery-God bless you too

[nvp815]

Maureen,

As you are aware, I am overjoyed that you have been given this opportunity. I know it is a leap of faith, but definitely one worth taking.

Only the best to you always

Nan

[Fran57]

Thanks for updating us… I look forward to hearing how well it goes!

Fran 😉

[CLLCalifornia-USA]

Maureen, you’ve certainly had a bumpy roller coaster ride haven’t you? Best of luck going forward. Keep the faith 🙏Sally

[Mtk1]

All the best of luck going forward Maureen, and thank you for keeping us all informed with your journey.

Dave.

[Shefflass]

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

[Ghounds]

I hope everything goes as smoothly as possible for you after this difficult and uncertain few months.

[Doggoneit101]

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

[CycleWonder]

Wow! That visit must have been a wonderful surprise! So happy you were reconsidered for this therapy.

[Analeese]

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.

[studebaker]

Very best of luck, which is well deserved. 🤞🏻

[SurviveOr]

The absolute very best of luck to you.

[deters]

Love hugs and prayers coming!! Best of luck in this CAR-T journey . 🙏🙏🙏🙏🙏

[cd49]

That is wonderful news. Very happy for you!

[RogerPinner]

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.