POST 3 - CAR-T cell therapy

[casanova]

Since my last post things have been ticking over with regular blood tests, Clinic appointments and my bridging treatment which consists of weekly infusions of Rituximab and continuing with Venetoclax, 300mg daily. Apart from a reaction to the first infusion of Rituximab all has gone smoothly. In addition there have been meetings with a Dietician and Physiotherapist plus lung function and cardiopulmonary exercise tests.

At my last Clinic meeting I was given the excellent news that my T-cells had been returned to the hospital having been successfully modified. My admission date was also confirmed as 8th June 2023, so all systems go! Details of tests and procedures to be undertaken on admission day were also discussed. With an admission date and two weeks with only a Clinic and bloods appointment on the 6th June I set about making a few nice diary dates, eg hairdresser, catch up with family and a few close friends.

As often happens, the best laid plans....... Last Friday I received several calls from the hospital rearranging tests and procedures 😂. So now my 'free' days are again filled with appointments. Tomorrow, Monday, 5th June I am booked in for Immunoglobulins and another Echocardiogram. Tuesday is a full day: a bone marrow biopsy in the morning, bloods and Clinic in the afternoon and then a 5.00.pm appointment at a different hospital for a PET Scan, that hospital is on the other side of the City and I will be hitting it at rush hour - joy! At the moment Wednesday is free and hopefully I'll have time to gather my thoughts and get rid of the stress levels before the big day.

At 8.00.am on the 8th June I will have a central venous catheter fitted {also known as a Hickman Line}. Lymphodepletion {chemotherapy} will also commence: Cyclophosphamide {D-6} also Fludarabine for four days {D-6 to D-3} followed by two days rest and then Day 0 {14th June} will be the exciting day that I receive the first small dose of the modified T-cells. If all goes well it is planned that I will have the remaining T-cells on the 23rd June.

I hope the above gives enough of an insight into the interim period between Apheresis and Admission without too much waffle and I hope to post again, probably once I receive my T-cells.

Maureen UK

[nvp815]

So appreciative to be going through this journey with you!

💜💜💜

Nan

[casanova in reply to nvp815]

Me too x

[Tangolover]

Thank you for the update and wishing you well!!

[casanova in reply to Tangolover]

Many thanks.

[Mystic75]

Thank you, Maureen, providing the details. Wishing you all the best! ❤️

[casanova in reply to Mystic75]

Always good to share.

Maureen

[Ghounds]

Best wishes for a successful treatment!

[casanova in reply to Ghounds]

Fingers crossed.

Maureen

[spi3]

Praying your treatments go smoothly and that you have a speedy recovery! I recently watched a Q&A on a patients CAR-T - there are lessons learned - I will try to find the video and post it. Thank you for keeping us all informed.

[casanova in reply to spi3]

You're welcome. This treatment may be the way forward so it's good to have as much information as possible.

Maureen

[CycleWonder]

Maureen - Thank you for taking the time to post about your preparations before the CarT therapy actually begins. I wish you the best results and a boring CarT therapy!

[casanova in reply to CycleWonder]

Boring sounds good to me. Thank you.

Maureen

[cjc1]

All the best and hoping you come through with flying colours!

[casanova in reply to cjc1]

Thank you.

Maureen

[1ofakind]

just adding my good wishes for an uneventful treatment and a complete recovery !

Be Well ! And thank you for sharing!

[casanova in reply to 1ofakind]

Many thanks.

Maureen

[Lem1]

Wonderful description and giving us all hope for you and ourselves in the future! Best of luck and success to you. Stay positive and please keep us posted.

[casanova in reply to Lem1]

Thank you; I will post once treatment gets under way.

Maureen

[Oleboyredw-uk]

I'm hoping everything goes well for you. Don't pick a too long a sentence to write, it gets boring. You'll find the next days will whizz past, all the very best, robin

[casanova in reply to Oleboyredw-uk]

Thanks for the tip, never thought about how many times I may need to show I still have my faculties.

Maureen

[Oleboyredw-uk in reply to casanova]

Daily.

[casanova in reply to Oleboyredw-uk]

Okay: short and sweet it is. Thank you.

Maureen

[pati23]

Wishing you all the best for a smooth journey..

Pat

[casanova in reply to pati23]

Thank you.

Maureen

[Jm954 Administrator]

thanks for those details Maureen. Wishing you all the very very best xx

[casanova in reply to Jm954]

Thank you.

Maureen

[Livingwith67]

I wish you so much strength on this next bit of your journey. So pleased there’s more options for us later on down the road. I’m praying it all goes smoothly and you get the remission you need.

[casanova in reply to Livingwith67]

Many thanks.

Maureen

[Pearlpink]

good luck! Thank you for telling us this! Really appreciate your insights!

[casanova in reply to Pearlpink]

Hope it helps others.

Maureen

[surviving16]

Praying all goes well for you. Hugs!

[casanova in reply to surviving16]

Thank you.

Maureen

[JLJC]

sending you all the good thoughts and support! Thank you for sharing this experience with us. Stay 💪🏻strong !

[casanova in reply to JLJC]

Always positive.

Maureen

[thompsonellen2]

Thanks for sharing your journey and the steps taken during the process in detail for those of us who are headed in this direction. Best wishes. Be brave and hoping this will kick CLL out of your system once and for all.

[casanova in reply to thompsonellen2]

It would be wonderful wouldn't it.

Maureen

[Jmiah717]

Wishing you an uneventful and profoundly positive journey

[casanova in reply to Jmiah717]

Uneventful is always good.

Maureen

[Jmiah717 in reply to casanova]

Yes! I should say only good/positive "events." Best to you.

[Freckles54]

Hi Casanova, I have spent the last several years following the advancements of Car-T Cells. A good friend of mine has now been cancer free two years after receiving Car-T Cells from B-Cell Lukemia. All will go very well for you . Wishing you the very best.

[casanova in reply to Freckles54]

That is so good to hear and the more success stories the better.

Maureen

[GigiJen]

wishing you love and prayers to get you through this moment and on your journey to full remission!

[casanova in reply to GigiJen]

Many thanks.

Maureen

[MickUK]

Thank you for sharing your journey with us. I hope all goes well for you and I look forward to your next update.

[casanova in reply to MickUK]

I have benefitted from posts from others on this site and I hope my notes help fellow CLL'ers

Maureen

[Stamphappy]

Wishing you all the best, Casanova 🫂 Thank you for sharing your story with us. I look forward to your next post!

[casanova in reply to Stamphappy]

Thank you. Next step fairly soon now.

Maureen

[Gardengirl44]

How exciting!!

[casanova in reply to Gardengirl44]

It is, though tinged with that feeling of stepping into the unknown despite all the reading and questions asked and answered.

Maureen

[Oleboyredw-uk in reply to casanova]

You are with a great team Maureen, with documented processes and action plans. When my temperature started going up after second infusion they were on it, gave me the drugs and said it would start lowering the temp in about 30 mins. 15 mins later it was coming down. Moments like that inspire confidence (in me). Best to you as you progress, robin

PS, I made a conceptual walking track around my room, could get 45 steps per circuit. Made myself do a few circuits every day, doesn't sound much but part of my keeping myself busy. The physio also managed to get be a step from somewhere so I did a bit of that as well.

[casanova in reply to Oleboyredw-uk]

Thank you Robin, I agree they are a great team and it's good to know how quickly they were on it when things started to go off norm.

I had planned to use some You Tube videos I worked out to in lockdown: I live in an apartment with no access to outside space and they helped me maintain a level of fitness. I like your idea of a conceptual walking track so I'll let you know how many steps per circuit I manage!

Maureen

[studebaker]

All the best, Thank you for sharing and hopefully for a cure 🙏🏻🤞🏻🤗

Dana

[casanova]

It is what we all hope for, thank you.

Maureen

[Louis33]

I wish you the very, very best Maureen.

[casanova in reply to Louis33]

Thank you Louis33, all the kind good wishes are really appreciated.

Maureen