I'm now having second thoughts about starting Acalabrutinib (Calquence) and considering V + O (Venetoclax with Obinutuzumab). The thought of a year's treatment, then not having to take any meds again for a while (I hope) is appealing. However, I have a few trips planned with friends this summer, all booked and paid for. Would it make ANY difference if I were to delay the start of the treatment by around 3 months (Sept 25). Obviously I have no idea how I would to respond to either of these treatments but I was hoping that the Acalabrutinib drug might have fewer side effects, (keep working and going away on holidays) hence my original decision. I'm confused, basically.
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laabguy
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You may find that the first 2 months of V+O is very intense and may require ~15 trips to hospital with limited flexibility in that time frame. Acala is much easier to start and is far less demanding on scheduling.
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There's an optimum window for starting treatment. How long before you slip out of that window to where treatment becomes harder to endure, depends on the pace of your CLL progression and how low your haemoglobin, platelets and other indicators that treatment is recommended are to the treatment trigger thresholds.
Yeah what they said also you can start with Acalabrutinib since you need to work & travel. V&O will still be there when you have time to invest for the start up & closer monitoring. I would not delay treatment tho, if you’ve reached the criteria for starting. Please keep us posted.
Acalabrutinib will be an adjustment sunce many suffer with headaches & body aches. Keep your fluid up, caffeine if you can & slow down physical activity until you are adjusted is my recommendation.
V+O isn't available as a treatment for relapsed CLL in UK. That's US only.
UK NHS treatment sequencing.
V+O > cBTKi > VenR
V+I(brutinib) > cBTKi > VenR
cBTKi > VenR
VenR is repeatable if remission was longer than 2 years.
The big unanswered questions are :-
Does Ven+I/O > cBTKi give a longer duration than first line cBTKi?
Is it better to use Ven based treatments V+I/O > VenR before cBTKi? Half of those failing cBTKi do so due to progression, progression on cBTKi reduces the duration of subsequent Ven based treatments by about half compared to cBTKi intolerance.
I’m also UK based and didn’t want infusions if I could avoid them but wanted time limited treatment. I had three months of ibrutinib tablets then added in venetoclax tablets and am about half way through a 15 month fixed treatment. I have continued to travel and work. Perhaps worth discussing with your consultant and good luck with whatever treatment you choose.
I am 79 and have been on Acalabrutinib for several years for CLL. I have ADHD and I have all the energy I had when 45. I have not personally felt any side effects and I am doing voluntary work for up to 20 hours a day - same hours as when I was a businessman and, before that, a teacher.Of course, ADHD gifts me above average energy and intense focus, but the fact my body can continue at this level is a credit to Acalabrutinib.
So my vote would be for the drug that is giving me the opportunity to lead a busy, satisfying life!
Response to Acalabrutinib seems generally to be fairly straightforward but obviously varies from person to person. In my case, I had a bad response and major loss of mobility for several months after starting, mainly due to fluid retention, bruising, tinnitus, leg and chest pain etc but, having persevered through that period, I’m now quite fine.
So it seems to be a bit of a lottery, with the odds heavily on an easy experience but no guarantee. So forward planning involves some uncertainty.
Good luck with your decision-making. I would just go with my CLL specialist’s advice not with my diary.
Hello laabguy, I was put on Acalabrutinib/Calquence as first line CLL treatment during the Pandemic when Pharmaceutical Company made it available to NHS patients and am so thankful. This then was my 2nd cancer having had breast cancer and subsequent operations, 8 FEC75 chemo , 6 weeks radiotherapy and was still on 10 years Anastrozole so was very thankful NOT to have Chemo. Yes had usual headaches to start with but coffee took care of those. I appreciate that I am much older than you being currently 75 years old and that we all ha individual ways of reacting but for what it is worth, would opt for oral medication any time. All best wishes whatever you decide.
Hi I had Obinituzumab and Ibrutinib for 6 months (6 cycles) when I was diagnosed at the age of 56 , stage 4. After that I went on Acalabeutinib twice daily, now 4 yrs later I live a full and normal life as a full time dad to my 7 and 5 yrs olds. We travel a lot with a touring caravan throughout holidays, UK and France, and travel to Cyrpus.
I have monthly bloods and 6 monthly uMRD... all stable. I get IVIG top ups pre center ahdb keep GCSF jabs in my fridge if my neuts fall to low.
I’m 74 and have been taking Acal for 4 years now. Minimal side effects - beaches until I started drinking coffee or tea again (caffeine does the trick). I have fatigue but that’s from the CLL not the Acal. Good luck in your choice.
Hello laabguy, As we all know, having CLL can be a confusing roller coaster ride!
All I can do is give you my two cents I have been in remission for four and a half years after Ibrutinib for one year and then V and O for 2 years. I can say in hindsight, for the most part I just went on with my life. There was some fatigue and some vague nondescript reactions but nothing major.
Of course we all know there are so many different types of cancer and treatment. I just feel very grateful to see the treatment of CLL has come so far and in a such short period of time.
Again, for what it's worth I say take the trips go on with your life, know that you'll be okay have a backup in case they're our problems or doctor you can call that sort of support may be needed as well. Wishing you the best of luck no matter what route you choose to go. Lorna
I find you in the same situation that I was in just a few months ago. I too, had considered Calquence as my only choice, per my 1st oncologist. Her reasoning was because I wanted to keep working. She agreed to delay Calquence for 2 reasons, 1st I had a cruise that was set to go in 2 wks and I wanted a second opinion. On that Second opinion, I was given the V+O option. There concern was Calquence increased my chance of stroke due to A fib/A flutter increase. I also already have A flutter most likely due to sleep apnea, that was caused by the bulky disease from CLL.
When I elected to go with V+O, I already had 3 other trips planned. I also knew that there is a chance, that I couldn't go on any of these and I may not be at work for awhile. But the appeal of 1 yr of treatment vs lifetime of pills was high for me too.
In the end, I elected V+O treatments. I had to give up a Alaskan Cruise in July (I was able to get almost all of my money back with my trip insurance, I lost about 500). The other 2 trips are more local to the US or I'm able to keep my bubble small to minimize risks of being sick.
The V+O will wreck on WBC's for awhile. I've completed my 2nd month of treatments for V and almost 2 wks of O. My WBC's dropped from over 300K to 2K. I had literally no neutrophils until this wk. I have very few leukocytes and I have 0 Ephils at this point. So No work for 2 months, so far, limited access to direct family members only and yes multiple trips per wk for treatments and monitoring.
Has it been full of speedbumps, Yes.
Do I feel like I still made the right decision for me, my family, my career and my treatments: YES!
Would I still do this treatment over Calquence again if put in the same position. YES, I would. But everyone is different, and this is a decision between you, your family and your medical team. It's not an easy decision because its a complex decision. If you have a specific question about treatment, timing, etc, I'll answered based on my situation. But keep in mind, that even if we are identical in all labs, age, situation, our bodies can still react differently to the same treatments.
Your bio does not say when you were diagnosed with CLL and you just joined HealthUnlocked few days ago, but need to start treatment? Putting that into context my ALC was doubling every 2.5 months and my RBC and hemoglobin was dropping so fast if I had waited 1-2 months to start treatment, I would have had to have blood transfusions to function. Your doctor should be the best source of information, hopefully your doctor has enough trending blood tests to answer your question. Blessings.
I usually don't like to post about bad reactions to a treatment. But since you have a trip paid for. This may not happen to you. The end of January I had to change treatments from ibrutinib to Obinutuzumab. I chose O for the same reason. But the 1st infusion of O, I only made it 8 minutes until I started having a reaction. They calmed things down and finished the infusion. I went the next day for 2nd. Things went well. But the next day I ran 102 temp. I was so weak I couldn't even stand long enough to brush my teeth. I needed up in the hospital and all my numbers bottomed out. It's April 20th and just 2 weeks that I feel myself. I wish you the best in your choose of treatment.
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