This is my latest update and not the one I expected to write. Those members following my CAR-T journey will recall my Consultant was to call me last Wednesday with an up date. I anticipated one of the following scenarios:
- Bone marrow report back and a new admission date,
- The bone marrow sample was not good enough to report on and another bone marrow biopsy would be needed,
- The full report was still awaited.
At 6.30.pm on Wednesday I received yet another curved ball: the report showed a higher level of disease in the marrow than had been anticipated. Furthermore they would have to speak with the over arching body in London who are running the Trial. Not a good result as there was obviously an issue. It was left that my Consultant would call me on Friday with an update. So, a worrying couple of days and sleepless nights.
I got the call late yesterday afternoon and the up shot is I cannot go ahead with the Trial as the risks for me are too high. It was the outcome I had half expected after Wednesday's call but it has still knocked me for six. I feel pretty low at the moment, but time to refocus once I get my head around everything.
My blood results have remained low throughout the last four months. The latest on 6th June being: Abs .Lymphocytes - 4.00, WCC - 6.9, Platelets - 104, Haemoglobin - 122, Neutrophils - 2.1. Lymph nodes only slightly enlarged; none visible or palpable. So to learn my bone marrow was significantly disease laden was a shock. I do not know how disease in the marrow is calculated so I asked my Consultant for a layman explanation in terms of a percentage of disease, eg 50%, 75%, 80/90%. The response was 80/90%. I then asked what it was at my last bone marrow biopsy on 27th March, apparently it was similar. Obviously the bridging treatment of five Rituximab infusions whilst continuing with Venetoclax had not cleared the bone marrow.
The proposal is now to commence Acalabrutinib in the next few weeks to try and reduce the disease burden. IF it works I may still be able to join the Trial. I feel it is unlikely to be effective in the short term, but maybe that is just how I am feeling at the moment. I am so disappointed and emotionally drained and, if I am honest, I think my ship has sailed!
However, I will gather my thoughts over the next few days and start to pull together some questions to discuss at my next Clinic appointment which should be sometime in the next week or two.
I send a huge thank you to all who have taken an interest in my journey and for the support and good wishes I have received. I will write again when I have a clearer idea of the next stage in my CLL journey.
Bye for now.
Maureen
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casanova
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Maureen,That is a lot to handle over a couple of days. I hope the acalabrutinib works for you so you can proceed to the trial as planned. I know it is hard not to fret over what those results will be. Try to stay positive and envision that ship sailing toward you carrying good news.
Sorry to hear things aren't going as planned, how awful for you. Please try to remain optimistic; you may respond to the acalabrutinib. Not everyone reacts the same way to the drugs, you may just need a bit more time to clear out your marrow than anticipated/the average patient. Focus on "acalabrutinib, clear out my marrow" instead of all the outcomes you do Not want to have occur. Try to think of *what you want to have happen*. I can't promise the drug will do what is hoped, but I've gone from almost 100% infiltration, when the docs thought nothing would work, to still being here. I found I was much less stressed when focused on what I wanted. Praying for you.
You are right and I have heard and seen many good reports on Acalabrutinib so if that is the way forward I am okay with that. Just need a bit of space to sort the emotions.
Sorry about the news Maureen. Cll can be such a roller coaster for us. Thankfully we often get some highs after our worst dips, I remember my despair when I was failing my first AIHA treatments.
I am on acalabrutinib now and it’s been an excellent drug for me. I’m very hopeful you enjoy success with it as well and get out of the dip. Good luck, please keep us posted.
I'm so sorry to hear of your current journey but please note last Jan 2022 my husband couldn't walk and was in very bad shape- well within 2 weeks of taking acalabrutinib (I call them his Warrior Angels) he was walking and feeling anew and like himself again! I'm praying that Acalabrutinib will become your Warrior Angels too! You will be in my prayers too
Maureen, this must feel like a huge setback for you but it may not be.
The threshold for levels of CLL disease in the marrow are quite low, I was told 20%, so yours is unfortunately much too high. The reason that they won't do it with high levels of CLL is that you would be at massive risk of tumour lysis syndrome, cytokine release syndrome and ICANS - Immune Effector cell-associated neurotoxicity syndrome which causes neurological symptoms and all/any of them can be fatal if they cannot be controlled.
Your doctor is not saying no, just - not now. I hope you get the go ahead very soon.
Thank you Jackie. I realise the decision was made for safety reasons having discussed with my consultant at the outset the risks associated with undertaking CAR-T. Your explanation concentrates the mind and also enables other members to understand some of the reasons behind the decision. I appreciate your kind words.
You must stay positive and speak to as many specialists as possible is to see if pirtobrutinib (Jaypirica) is an option and is preferable to Acalabrutinib. If yes then have them contact Eli-Lilly for "compassionate" access to this drug which is still Clinical Trials.
Thank you for the link to the article: it really is amazing how treatment of CLL has developed in this past decade. As I am currently in a Clinical Trial I am not sure I would be allowed access to another drug still in clinical trials. At this stage I am okay to go with Acalabrutinib which has been successful for many people, however, it is good to know there are other options should I be unable to go ahead as a participant in the CAR-T Trial or that I do not tolerate Acalabrutinib.
Be kind to yourself as you digest this news that you were not expecting. Acalabrutinib has been a good choice for many - I hope it it for you as well. We will be sending cheerful thoughts your way.
It is amazing how resilient we are once we have processed events and reasons for those events. Sometimes we just need that space to gather our thoughts and see things more clearly through the mist of disappointment. The love and support of family and our CLL 'family' here have been invaluable. Many thanks.
oh that must have felt devastating! Good that your doctors have got your back though. Good luck with the acalabrutinib. I had no idea that the CART treatment couldn’t be done with high percentages so you have taught so many of us the things to expect. Thank you for your honest and detailed accounts of your experience.
I must admit, I've often thought that some trials seemed to be a bit mean with their exclusions, but this time it is more clear now that they are safety guidelines and it’s good that they are happy to treat if the percentage comes down. A real eye opener for me.
It’s gutting that at this late stage, after all that anticipation that it suddenly stops, but I’m so glad for you that there are so many people on here with so much experience of what happens next! Good luck and big hug too!
It is reassuring that safety guidelines are in place and I know that my Team discussed my case at the highest level and took the decision with my safety paramount. At the end of the day Trials help set future safety standards which is good for those following. Thank you for your good wishes and hug.
I am sending you hope and support. You may very well see positive change on acalabrutinib in 3-4 months. When I started it I saw change in the first 30 days and it has continued. Stay strong 💪🏻 and I would still care to hear about your journey if you want to continue sharing. This group supports you are we are here for you. Take care 🥰
You are so right - plan A, plan B, plan C....... I am lucky to have the opportunity of another Plan, which would not have been the case only a few years ago.
Dear Casanova, warmest heartfelt hugs. I pray you are soon able to continue with your plans. Time to regroup your determination and believe you can achieve this goal. A wise oncologist/hemotolagist once told me, "Our patients greatly underestimate the power of positive thinking." So, I'm sending positive vibes, prayers, and hugs.
Thank you for sharing your journey. We're here with you ❤️
I really am normally a very positive person, but I was on a low the other day, however, all the positive and caring words given to me since my post has restored that positivity. Thank you.
Glad to hear you are already regaining your equilibrium. I’m so sorry to hear about your disappointing bone marrow results. Many prayers and hugs coming your way that the Acalabtutinib hits a home run for you.
We are standing with you as you navigate the next steps of this journey. Praying for the best possible outcomes at each step along the path. You are not alone.
I don’t understand your hemoglobin number unless we measure with different a different terminology in the states. We say hemoglobin must be 12 or greater. Under 12 Medicare pays for an injection or series of injections of. erithopoten
I have prostate cancer too so I have serious decisions to make in the tumor world.
The UK obviously shows numbers differently, my haemoglobin is okay so no issues there. I am sorry that you have another difficult situation to deal with and I wish you well with your pending future treatment. Thank you for taking time out to write.
I commenced Venetoclax mono therapy in September 2017 and it has been an excellent treatment for me. It started to fail towards the end of last year. I'm afraid I can't recall the detail of the ramp up other than it commenced at 100mg and increased by another 100mg over a number of weeks until I took 400mg. A number of years later my platelets were dropping significantly and my dose reduced to 300mg and has remained at that level ever since. In short there was no ramp up prior to the bone marrow biopsy, I was still taking 300mg as part of the bridging treatment leading up to admission for CAR-T.
I have refocussed and will take each step forward day by day. Thank you for posting.
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