Many of you have been kind enough to ask about my current situation.
For those not aware, briefly - I relapsed within days of stopping Ibrutinib (due to funding and end of the trial) which I had received as part of the FLAIR trial. I had 7cm nodes under my arms which had come up almost overnight and a large amount of nodes throughout my body. I underwent investigations for Richter's, including surgery, and it was decided that I had very aggressive CLL but no Richter's. I then went to London for a trial of NVG 111 a Bi Specific T cell engaging antibody which everyone had high hopes for. I was on Acalabrutinib just prior to this to hold my CLL and it was stopped as part of the new trial but my LNs started to grow again and I felt very sick. Unfortunately, after a week in hospital it was apparent that the treatment wasn't working and I was in a worse situation than before I tool part.
My final option was Venetoclax + Rituximab which is standard treatment for relapsed CLL in the UK and consolidation with a bone marrow/stem cell transplant was discussed, depending on how my CLL responded. I recently had my 6 month assessment of MRD and the results are now in. I still have some 3cm LNs (an improvement on the 9cm prior to treatment) and CLL cells at around 1/1000. So, not great but not the worst and a transplant is on hold for the moment.
I think my Dr was trying to cheer me up saying what a huge improvement this was and how worried he'd been about me! We'll do it all again at the 12 month mark and see how things are going. I'm not keen on a transplant (too old) but my Dr has a pirtobrutinib trial and a few more things up his sleeve he tells me - although I'm not quite sure what that means. Anyway, I've decided to leave the worrying to him and I'm going to enjoy my dogs and life generally.
Best wishes to everyone
Jackie
photo is my young Labrador Mabel
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Jm954
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Yes, thank you , Jackie. Have been wondering how you were progressing. Enjoying your dogs seems like the perfect antidote to your unpredictable journey. Your postings always give me detailed information (so appreciated), hope and encouragement to - just get on with it. Thank you.
Jackie thank you for updating us. You must be relieved at the improvement and also that a transplant is not in your immediate future. I have been reading some very positive sounding things recently about Pirtobrutinib, and I had planned to ask about it at my next appointment with my CLL specialist.
I think the last sentence of your post is such a good sensible outlook, I want to try my best to take those words to heart for myself going forward if I can.
Jackie, thanks so much for the update. You are such a stalwart among us as both fellow traveler and adviser. I like the doc’s opinion that this is a good improvement, but mostly that he has some things up his sleeve. As it happens, I have just entered the BRUIN trial at Duke and am in the V+O arm. Getting the first rituximab Monday. Hope for the same minimal reaction I had 10 years ago with FCR.
The very best part of your post is that you plan to leave the worry elsewhere and hang with your dogs. Forward, ho!!!
Hi Jackie I am so pleased to hear that you are doing better after the difficulties you have had. I wish you well with your current improved state of health and hope it continues for a long time before and hopefully if you ever need any of the future treatments you refer to. Enjoy life and your dogs.
I personally think that sounds like very positive news, and I think that your consultant sounds great, and I know you will be discussing every detail with him.
I am delighted that you and your dogs will enjoy a happy autumn.
hi, thanks for letting us know. It is a stark reminder that not all who are at the forefront of this amazing site are fit and able. I do wish you well for the future
Big relief to hear how much you’ve improved. I hope your 12 month tests show even better results.
Interesting that your doctor said he’d been very worried about you. He sounds a kind man - doctors don’t usually say that. Good to know he’s got some other treatment options in mind if necessary.
Good decision to leave the worrying to your doctor and enjoy life. Sometimes that’s easier said than done, but I’m sure your lovely dogs will help you!
As Julian of Norwich said about 700 years ago (as have others today) "all shall be well, and all shall be well, and all manner of thing shall be well".
Know what you are going through with aggressive CLL and false ET. I started V&O on 7th and crashed on first treatment with anaphylactic shock, though I was gone but fast acting nurse pulled be back with EmiPin and shot of Benadryl. I hung in there following day with 5ml dosing and then 127 ml dosing third day, uneventful. not too wild about bone marrow/stem cell transfer as no family donors. On the bright side I have made it 5 years since diagnoses and look forward to many more. My sincere blessing to you going forward. Sounds like you have good team helping you.
Good to hear you are improving Jackie. I hope things continue to improve. As my consultant said to me back in 2012, your CLL is now my job, your job is to get on with life. I paraphrase as I cant remember the words exactly, but it is nice to read your Dr has a similar approach.
As you will know better than most of us, there are options, more than when we started out in this journey.
All the very best to you, Mabel and the rest of your family, rob.
PS. I just looked at your profile and spotted you're 11Qdel unmutated - same subsection of the club as me!
Jackie, thanks for update and in my thoughts and prayers. Life is a roller coaster, forums and friends such as here are on that roller coaster and are a tremendous support in my mind. I am in awe of your ability still to contribute to and support the CLL Support charity and thus us all in applications for new trials and information on developments. God Bless
wishing you well and hope that you will be feeling better - Sorry that you are going through these setbacks - it is frustrating and anxiety provoking - I admire your strength and determination to push forward with newer and treatments while at the same time taking the time to enjoy the nicer things in life ….
Am personally very thankful to you for always being there for us all - to answer our questions and concerns - know that there are so many of us caring about you , wishing you well and looking forward to hearing about your progress -
Jackie, I'm really pleased the V+R seems to be effective and equally importantly that you're feeling so much better, physically and I suspect, mentally. And of course the dogs help. I had my 'grand-dog', a lab called Sophie, for most of the summer whilst her family were away. I'm sure that did me almost as much good as the Venetoclax.
So good to hear the update and the concern that your Dr has for you. How long were you on V&R before the pause?and is the plan to retreat with V&R if numbers start to change. I am currently in Loxo trial (42 mo) and although starting to show some resistance think it is good option with few side effects. would be glad to share my journey with this drug if you wish. FDA is now looking at this trial’s data to perhaps fast track it’s approval? Stay well. Fran
I am so relieved to hear that! It is bad enough to see CLL progress, but there is no excuse when government and corporate incompetence leave you high and dry. I don’t see why V won’t continue making progress? Congratulations on the good news, and praying that it becomes great news!
Thank you so much for the update and I can imagine the apprehension you must have felt wondering what the September results would be.
The improvements seem very encouraging and being able to delay a decision on the transplant must be a huge relief.
Learning how to 'compartmentalize' the worry so we do not ignore the business of living is a skillset I'm still learning, so I appreciate your example. ❤️
Mabel is quite the looker! She definitely looks like she is enjoying her walk!
Jackie, I'm really happy to read some positive updates from you. You are right, let's focus on the positives, it isn't always easy (definitely easier to say) but I agree with you, sometimes it's just too much to consider other things as it ends up robbing us off the times when (in hindsight) we were still "well" (I know I'm definitely guilty of it myself). All the best.
Thank you for update Jackie. It is a great relief to see improvement with your therapy and transplant being on hold. I am in similar situation myself.
Hopefully, there will be a very long remission for both of us and if we will need therapy again there are going to be good options for us 🙏🏻
I love your Mabel, she looks like very intelligent dog and just seeing her brings calmness.
Very best to you Jackie 🤗
Dana
Hi Jackie,
Mabel is so adorable. I miss having a dog~
Glad to know your update and sending you lots of virtual hugs and well wishes. The worrying is best left at the wayside, not always easy but staying mindful & enjoying life is the way to go!
You have captured Mabel in her element, surveying the area with a proprietary calm. May that same proprietary calm be with you as you go about enjoying being in the moment.
The cares we have for the next moment and beyond are ones we often give more attention than the one we are in.
Jackie, thanks for the update. I have two yellow labs and they have pulled me through some really rough stages of my CLL journey. They forced me out on some long hikes and walks that made me feel alive again. I’m sure yours have done the same. Prayers for strength and courage.🙏Sally
Thank you so much for keeping us up to date Jackie. Your journey helps us to make our own decisions and your honesty about your feelings and experiences keeps us grounded. You are a friend and an inspiration.
Thank you for the update Jackie. I am pleased your results have improved over the last 6 months and am hoping that your 12 monthly is an even further improvement. You have helped so many with sound advice (myself included when I relapsed last year) that I know there are very many well wishers sending you positive thoughts and energy. I hope this sustains you and gives you strength to keep on fighting for years to come.
Hi Jackie. Thank you for the update, have been wondering how you were getting on. So sorry to hear you have been struggling but I know your doctor will do everything he can for you. Fingers are crossed for you with the new treatment. Take care and stroke those beautiful dogs for me.
hi J, you’ve come to mind often recently so I’m delighted to hear your still going strong with a great attitude and a Dr with options!
Your journey is close to mine as I seem to be finally relapsing from Ibrutinib after eight wonderful years! Based on CT scans next week alongside bloods me and my Dr will agree when I start Vclax mono therapy. When I asked him how long he believed it would work for me he categorically said “two to three years.”….I like to believe he wouldn’t say that without a high degree of confidence. He was then v positive about not just the viability of piroibrutinib but it being readily available within the next 18 to 24 months.
Meantime I’ve been getting a little down about it all (here we go again syndrome!), but with a new quirk where pals now say “well you’ve had a great run at this!”….as I’ve been doing the whole thing for 15 years (since I was 41). Dont they know I want to live!! 😂 But your story yet again inspires me, and I feel better already…thank you 🙏🏻
I don't think 'normal, healthy' people realise the stress of living knowing this or the next treatment might not work, where the next one will come from etc etc. We do desperately want to live and to live well too so we try to make the most of every day.
Jackie I missed your post, so am a week late, but want to wish you all the best going forward.
Talking of which, yesterday I had a visit from an old friend, after a gap of 10+ years. He recently returned from the Georgian Caucasus Mountains, solo from York on a Suzuki V-Strom. He keeps a FB 954 for more spirited rides, time-limited by creaking joints 😒
re the bike - Wooohooo!! I wish I still had mine, I would be riding every weekend and feeling really alive with the air rushing past me. There's nothing like it, except perhaps downhill skiing
Hi Jm954. I is very nice that you posted an update on your status and hope that you will continue letting everyone know how you are. It is wonderful to know that Venetoclax and Rituximab were a good choice for your situation! I am wondering if your next check for umrd status might include a check on CD 19? It has now been 8 months since I completed one year of V, and 18 months since my last obinutuzumab infusion, and my labs last week showed no CD19 cells, so I am assuming I don't have any B cells regenerating yet, so likely have no CLL cells in my blood - are my assumptions likely correct? is checking CD19 status any sort of proxy during V&R treatment for assumptions on umrd status?
You are correct that CD19 is the marker for B cells, so yes, you don't have any B cells, to the limits of detection used in your lab report above. However, that's only reporting at a fairly high count level in cells per microlitre. You have under 25, (presumably the limit of detection) whereas the usual range is from 55 to 621. uMRD reporting is at a much finer level of detection. It's still good news that you have a very low level of B cells and hence possible CLL cells present. When the number creeps up, the next test is seeing how many of them are healthy B cells and how many are clones, in other words, a return of your CLL. Even then, it could many be years before they grow to a level requiring another treatment.
All the best to you Jackie. Glad you have aome good news. I like your Docs we are going to beat this positive attitude.I look forward to that happening for you..
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Venetoclax has been added to the Pharmaceutical Benefits Scheme in Australia for use as a retreatment for CLL/SLL
