I've got a long and varied CLL history. Long story made short for those not familiar, I was diagnosed in 2013 in my own lab when I was working as a NHS healthcare scientist in Haematology. I am. 11q del and rapidly enlarging nodes meant I started treatment with Ibrutinib in October 2015. Six years later treatment stopped and I relapsed with huge axillary nodes within days.
Richter's was suspected so I was put on Acalabrutinib to try to holdout and underwent a CT, PET and surgical excision of one of the nodes over December 21. Thankfully, it was 'only' accelerated CLL but still needed urgent treatment. I was referred to Dr Parag Jasani for a first in human trial of a bispecific T cell engaging antibody.
Unfortunately, it made no difference to my CLL and I was now feeling extremely ill so I started VR in April 2022. Slowly I started to improve and almost a year later I was in remission. My consultant had already mentioned the possibility of a stem cell transplant but I was very resistant to the idea. I knew what a brutal process it was and it was rarely used for CLL due to the age of patients. He had already searched the donor register and found me a 12/12 match in Germany. I knew that if I was going to have a transplant it had to be whilst I was in remission for it to have any chance of success so in April 23 I agreed.
I had the transplant at the end of June 23 and the chemo and recovery process were even worse than I thought. Results at 6 months and a year didn't look great, with only 45% donor T cells in my blood and marrow and I felt pessimistic as the transplant process had severely affected my kidney funtion and blood pressure too.
Transplant success and a reduced chance of relapse needs at least 95% so I had a 'top up' of donor T cells in September 23. A few weeks ago I had another BMB and the results are in - my donor T cells are now 99%. I'm not sure how I feel, relief yes but relaxed, no. I've spent the last few years with an uncertain future so I think it hasn't quite sunk in yet but I'm happy with it all at last.
Jackie
photo is me walking my three girls ❤️
Written by
Jm954
Administrator
To view profiles and participate in discussions please or .
Glad to see you walking your girls, Jackie. Hopefully the "topping off" with donor T cells will do the job and finish off the CLL. Best wishes for success.
great to hear Jackie. I remember you telling me about this when we were both RoSPA bikers members in Brum. A long journey but hopefully paying dividends now.
Wow Jackie, after everything you've gone through, this is really a moment to reflect and just let that feeling of relief slowly wash over you. A big deep exhale as it eventually does sink in....99%. Again, wow.
I'm just enormously happy for you and to read this update from you has actually given my day a vicarious lift too. 🙂
I have to say also, I love the picture so much. It's almost like you and your beautiful dogs are walking away from the struggles of the past, and towards something truly wonderful. ❤️
I was 67 and very fit, it's not for the fainthearted. It's been a long struggle to regain any fitness and I'm still working to be where I was beforehand.
This is absolutely fantastic news my dear friend and I’m both delighted and relieved! I know what you’ve been through to reach this point and you rarely make your personal concerns known so it’s great to hear this really positive news.
Fabulous photo of you and your ‘girls’ who undoubtedly keep you fit and give masses and masses of affection 😊 They certainly seem to stay in tight formation so are well trained.
Fabulous and positive news Jackie, after all you have been through. 99% sounds good to me.
So what colour will the new father be ? Have you started looking yet. Pity my 🐈🐈 don’t want to go on long walks, but I am happy as I hate snow but the exercise would be useful.
Hi Colette, The pups will be yellow and yes, I know which dog will sire them. I take breeding seriously and these will be fabulous pups. I already have a list of seven people wanting one as Mabel is an exceptional girl and the father is a Field Trial Champion, as is Mabel's sister. I'm looking forward to training a new pup and the future. xx
What a remarkable achievement! Thank you for the update and the penultimate gift of your photo! All will continue to be well. So grateful for your notes. They are inspiring and filled with contagious hope and encouragement. Thank you.
Wonderful news, very pleased for you and you deserve this after such a gruelling treatment process. You've been so courageous, you're an inspiration. Do please post photos of the new puppy!
It will very likely take some time for you to feel relaxed as you had really tough days to get through in the past few years, but your beautiful ladies will help to get on solid grounds 🙏🏻
Content on HealthUnlocked does not replace the relationship between you and doctors or other healthcare professionals nor the advice you receive from them.
Never delay seeking advice or dialling emergency services because of something that you have read on HealthUnlocked.
flow cytometry is showing about 74% CLL involvement. 
Good News
New Years Good News
