I started acalabrutinib ~ 4 months ago and my nodes and spleen are normal again (took only a few weeks) and my HGB and PLT counts are in normal range. My WBC is at 16 during last checkup, but much better than the 150 when I started. Very happy with the results so far and my only side effect was a headache on day 3, 4 and 5. I know results vary with everyone, and I am very thankful its worked so well thus far.
Phase II - Initially my doc was planning to add Venetoclax, but he is starting to think that since Acal is working so well, maybe stay with it for longer or potentially add Obin, and save the Ven for later if/when needed. I wanted to ask as anyone done A+O yet? or have any other thoughts on this strategy?
Thanks and I hope everyone is enjoying their summer (those of us in the northern hemisphere).
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Flitzebogen
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It's great to hear that Calquence is working well for you. The question about sequencing or combination treatments is a hot topic over the last 2 years, but I haven't heard a consensus answer from the CLL experts.
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My CLL expert favors using Calquence & Venetoclax to reach MRD-U (Minimal Residual Disease - UnDetectable or UnMeasurable) then pausing treatment until the CLL progresses, and restarting the same combo.
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Using Gazyva / Obinutuzumab added to Calquence is another option that might get you to MRD-U and allow pausing treatment for months or years.
Thanks Len. I have been using 2 docs. One local guy (partners with Dana-Farber) that I go to for most checkins and one at Dana-Farber that is on that top expert list (thanks for sending that). They work together which is nice so I don't have to travel as much for most of my visits. The plan originally was to start with A and then add V after 3 or 4 months. A is working out so well, my local doc was considering staying on that solely a little longer and potentially trying O and saving V for later. No decision was made, just spitballing thoughts. I'll get more intel at my August visit, but figured I'd float that combo (A+O) here to see if anyone has had any experience with it. I might push for the V if I don't hear anything.
While both regimens are being done by Drs., a discussion with your Dr. about the effect Obinutuzumab has on depletion of immunity might be appropriate for you to have.
-I am not a Dr. or medically trained; but with my treatment experience I have a long waiting period to be able to replenish my O-depleted immunity and will hopefully be able by April to begin getting renewal of the childhood shots that have protected me for years .
You are young and working I assume, and may be married with children/grandchildren so you may be at higher risk, with the existing possibilities of COVID.
Yes i started feb 8, A 6 weeks added O completed 3 cycles 3 more to go. Headache s are bad sometimes and fatigue. I have relapsed from B/R treatment 2016, 2017.Unmutaded, del, 13. And i may end up doing a hybrid story of add +V.
Hi, I am on A &O. I have been on Acalabrutinib for about 18 months and it has worked brilliantly. O was delayed due to Covid and the infection risk but I am half way through my first cycle. My tumour burden was low at the start of O, and I think this has helped in terms of reactions which has been literally nothing other than one woozy moment for about 10 seconds. My doctor recommended A over V &O because I am 11q unmutated. The limited years of data collected is now showing a small but absolute advantage to adding O. The gap in OS is just becoming significant in data terms over mono therapy. The gap is still small in real terms but the trend indicates it will widen as time goes on. Given this (my doctor is part of the study team) he said at my age (50’s) and in otherwise good health, it was a no brainer. I went with it - although I was tempted to stay on the mono - because I hope it gives me longer until another treatment is needed. A&O does seem a less used combo but I think in part that is because Acalabrutinib isn’t readily available yet on the NHS for first line treatment. I’m not sure about other countries. I hope that helps a little!
Ahh ... a fellow traveller in the 11q unmutated club!
It sounds like you are in the UK - or is that an incorrect assumption?
If you are in this sceptered (if somewhat blighted) isle, please could you give me the coordinates of the doctor who gave this advice?
I am thriving on A (give or take dodgy platelets and an immunoglobulin vacuum) and toying with the idea of "+O" ... but would be keen on a second opinion.
Hi there, I see Professor George Follows at Genesis Care. He is head of haematology (I might not have the area right) at Addenbrookes in Cambridge. You’ll be able to find his details online. Good luck finding out if it’s right for you.
Hi Dave, I know that I was fortunate and everyone experiences different results to different treatments. With Acalabrutinub, after an initial 2 week spike when I started (I went up 50k which seems to be the norm) it appears that the blood initially tends to have more lymphocytes when you start, but then as they can’t multiply any more they gradually reduce in number. After a month my number was cut in half and it's been a slower grind since that first month. My WBC count was at 16k last visit and 2 weeks prior it was at 18k. The more I learn/read it seems that Acalabrutinib alone does a good job in keeping your count in check, but your blood lymphocytes never gets to 0. Thats where the combo (adding a V or O) makes sense if you want to try for MRD vs just keeping it in check. We shall see. Good luck to you and I hope you WBC comes down soon.
Thank you for your reply and I am very happy to know that your are responding very well to your treatment. I think my WBC did not come down fast enough may be due to I have TP53 mutation . I really hope with the V combo , my lab result can be normalised soon.
I am currently in a fixed duration A+O clinical trial at Memorial Sloan Kettering with Dr. Mato. I began thirteen cycles of A in July '21 and 6 cycles of O in August '21. The highly sensitive labs looking for CLL cells in a million cell sample(!) found only 3!! I am MRD-U and have stopped taking A. I will continue to be monitored for up to 3.5 years as part of the clinical trial. Like you, V remains a possible next treatment option when I relapse.
As always noted on this site, everyone is different. This treatment happened to work out very well for me.
this is the plan of record for me - to use acala until it no longer works and then move on to another treatment. I am on year 2 for acala and holding steady with excellent results and no real side effects (bruising in first month or two). If and when it no longer works we look at the next line of treatment, which could be years for now and provide different options. My doctor is one of the leading CLL specialists at Seattle Cancer Care...and is a main researcher on T-Cell therapy. He's top notch IMHO!
Thanks C. Glad to hear A is working out well for you and that you like your doc. The decision I ultimately need to make is either stick with just the A and keep the CLL in check for as long as it can -or- add the combo and shoot for MRD and hope to be able to stop taking anything. Decisions, decisions. But how fortunate are we all that we have these options today. Have a great weekend.
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