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 ❤️
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Jm954
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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.
Jackie - It is worth it to get back in shape. It’s been awhile since you even felt like you could - don’t rush it. Push a little, then stay there until it feels right. Then push again. You’ll get there.
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 🙏🏻
What a long road you've traveled! I'm so happy this last round has added a beautiful number to all the !@#$$% numbers we have to hear. May it continue the upward trajectory!!
Hopefully you are finally cured and your new immune system killed any potential CLL cell survivors. Your success is inspiring especially since I’m pretty sure I’ll be in your shoes one day as a fellow 11qer.
Fabulous News ! Thanks for sharing your story & turbulent health history. Glad you are on the mends, recovered, and continuing in remission and positive good health. We continue to all pray. Btw, love the photo of you and "your girls". I'm never suspicious of the four legged, but often suspect of the two legged. I also have an affinity towards Labs, especially black labs. Cheers
Hi Jm954, I am so glad to hear your news, that has been a very long 11 years 🤗 Lovely picture of you and your girls, bet it feels amazing to be out there with them!
Jackie, I'm really truly delighted to hear your news. I know it hasn't been easy (gross understatement), reaching the stage you are now. You've been very brave and you deserve all the good times that hopefully lie ahead.
We are looking after our son's lab, Sophie, this weekend, we are regular dog sitters for both of our sons, and I know the joy just having her around brings...and you have it three times (soon to be four?) over.
Thanks for all your help and advice in the past. Keep well.
Jackie, amazing news, absolutely amazing 👏🏻 I'm so happy for you, so happy I'm actually feeling quite emotional...it's great to read some positive news on a forum where a lot isn't quite that way. Enjoy life, the photo looks very relaxing. Thank you for sharing it with us.Petra ❤️
I’m sure it feels great to have the energy to walk your girls. My two yellow labs have been my source of inspiration and support during some of my worst days. Thanks for sharing your experience. Sally
My wife has been asking weekly...any news about Jackie? I would love to wake her and tell her, but will hold off on that. There have been some downers of late, but this is truly uplifting for all of us. You have helped so many on this site and we did not want to lose you...selfish of us I know. Yet your path gives us such hope. Rejoicing...rejoicing....what a Christmas this will be for you and us.😍🙏
THIS is exactly why I love this group and read each post. Thank you for taking the time to share your journey. It shows there is much to be hopeful for! I am sure you have given so many here the strength to keep fighting! Julie
I cannot imagine the highs and lows of your journey and have followed it periodically. I totally understand your emotions now though and your photo could have many captions I love it!! Our beloved friends bring us incredible happiness, joy, love and loyalty. I've still precious memories of my Golden Retriever greeting me at the door tail wagging uncontrollably after being in hospital for kidney removal from kidney cancer. Take care and may your good health continue!
“Not so bad”? I’m guessing you haven’t spent much time in hospitals. Five weeks is an eternity. I spent one week in a hospital a couple years back and by the end of my stay I nearly jumped out the window. I can’t fathom what five weeks must be like.
I understand. I’ll probably be there right along with you, unfortunately. I’m finishing my second line treatment next month. Hopefully, it holds for a while.
I’ve learned not to dwell on the future and to live in the present. When the time comes for your next treatment put your head down and face the challenge head on. That approach has always worked for me.
What wonderful news. You have been so generous sharing your experience and knowledge with the rest of us. Enjoy your time with your girls. Looking forward to the announcement of the new babies.
Hi Jackie. You don’t know me as I am still a newbie to CLL. I am doing well on brukinsa but continue to fear the future. I read of your struggles and your bravery to fight this disease. I have had trouble with the word chronic knowing my life has forever changed. I don’t know how long it will take me to feel comfortable in my own skin. Thank you for posting your hope to continue to fight and enjoy life again.
Wow what a roller coaster ride, but ultimately and good one for you and your family. I wish you continued good health and happiness. Thank you for sharing! Blessings!
Joyous news!!! I'm SO happy for you! 🥳 Thank you, so very much, for all you do for all of us ❤️. Love the photo! It's so nice to see the person on the other end of this phone 💞 ! Your dogs are beautiful. Two years ago, I bought a pug ...he has grown to 3 times the expected size 🤣 . Looks like a pug except he's BIG. Clearly, his daddy was not 100% pug. Just the same, we love him dearly. I pray you enjoy endless peaceful walks with yours. 🤗
Hi Jackie this is great news for you and it’s great to read you are getting well again. I can understand your uncertainty after such a long battle with your CLL.I am sure your feelings of joy will come through once the shock has worn off and the experience is further behind you. Meanwhile we can all feel it for you. Well done you are certainly a survivor.
Hi Jackie what was the initial length of stay in the hospital from conditioning and waiting for the new stem cells to take and being allowed to go home with monitoring Stewie
Then I was at the hospital 3 times a week for many weeks. I was discharged with platelets of 12 and neuts of 0.2. Junior Dr strike and I think they decided that I was safer at home.
Well done and thanks for sharing your experience. I was hospitalized in isolation for 2 weeks earlier this year after 1 dose of obinutuzumab sent me into pancytopenia. It was rough. I don't remember most of the days at the beginning. After I could go home I was still very anemic and weak. We also went for walks to regain strength but initially they were pretty difficult. I get a little emotional thinking about that time and feel huge gratitude to the nurses and my wife who stayed at my side. I can't imagine what you have endured! Thank you for your strength, and for supporting all of us on this site!
Ok that failed on me because it wipe out my neutrophiles and now I am trying to get into a Trial for Car-t Cells therapy. I hope my energy levels and all the infections will be Ok by then. Thanks again for your info.
This must a huge relief for you. Your transplant sounds very gruelling but worth it. It must make everyday activities such as walking your dogs a great pleasure.
Can I ask why your consultant suggested you have a transplant when you were already in remission after your course of VR? Did they feel your remission wouldn't last long?
I had very aggressive CLL and it had been resistant to a couple of treatments, I had also developed two BTK mutations. I had already been investigated for Richter's and we both felt that any new remission was likely to be short lived. I also had an increased chance of developing Richters.
I had to have the transplant when I was in remission and I managed to achieve a really deep one albeit after 15 months of Venetoclax. If I had had any residual disease or or waited until I was relapsing the chances of success were extremely low. I didn't want a transplant but knew it was my only real chance of long term remission or even potentially a cure.
Thank you for your response Jackie. It sounds like you have had quite a very difficult journey to get to this point. It's great news that you have come through your stem cell transplant so well and can now look forward to the future with optimism.
What wonderfully positive news for you and so many others on here .
Congratulations 💐 🎉Great photo of your gorgeous girls as well.
After such a long rough haul of uncertainty, the relief was palpable here! I hope the relaxation cuts in real soon and you have a fabulous Christmas this year.
I’m late in seeing your update but it doesn’t make it any less impactful to read.
This is wonderful news, all the more sweeter because of all the effort it took for you to get to this point.
I’m so grateful for your medical expertise combined with your medical team plus the loving support from your family, friends (personal & forum), and your ‘girls’.
I have been away for a while and just noticed this update. That is wonderful news! You must be so relieved. I sincerely hope that your remission last for a long time and you are able to enjoy life to the fullest.
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flow cytometry is showing about 74% CLL involvement. 
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