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
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casanova
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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.
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!
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.
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
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.
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.
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.
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.
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!
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