I've been told by my blood consultant today that I will need to start treatment for my CLL. My two options are Acalabrutinib tablets or Venetoclax with Obinutuzumab - this involves multiple hospital visits on drips)
Quite honestly I'm feeling quite over whelmed by this new information and any advice would be greatly appreciated
Welcome to our community Laabguy,
Has your consultant explained that acalabrutinib is taken twice daily as a maintenance treatment until it ceases to work, whereas venetoclax and obinutuzumab (VO) is a fixed term of treatment? The obinutuzumab infusions are also only given for about 6 months. VO can be repeated, whereas when acalabrutinib stops working, venetoclax based therapy is currently the next choice. Resistance to acalabrutinib generally takes a median of 5 to 6 years to occur, though a few people have lasted on ibrutinib, the first generation drug like acalabrutinib, for over a decade.
At age 54, you want to drag out the time before you become resistant to current treatment choices as long as possible, to allow time for new treatment options to become available. If you have any information on your prognostic markers from your flow cytometry diagnosing test (i.e. your CD38 status), or if you have them, your FISH test results or your IGHV and TP53 mutation status, or even how long since your diagnosis, (how long you've been in watch and wait), these can provide some guidance on how long you might likely expect your CLL could take to become resistant to treatments.
Neil
Thank you for you reply Neil (also my name 👍)
It seems you give far more information Neil than all the doctors. I was given the choice too and thought Acalabrutinib was better as no trips to hospital involved, just take the tablets twice a day and eventually learned that I would be on them for life which I didn't realise at time. I wish the doctors explained everything as well as you do. Thanks.Ps Acalabrutinib is working well for me and blood results are very good.
Hello laabguy. Either V+O or acalabrutinib are both great options. It’s not unusual to be offered to choose among the two because they both work great and it can be a toss up as to which is best. What’s best for you might not be what’s best for someone else.
I think that in very general terms, for someone young and healthy, V+O is the best choice. It’s a time limited therapy that can give someone a 5 yrs or more drug free remission.
For someone in their 70’s , acalabrutinib might be a better choice. It’s two pills a day indefinitely. The risk of side effects might be less with acalabrutinib than V+O, if for no other reason, because its one drug instead of two. And if started later in life, calquence might be the only cll med one ever needs.
That said, both treatments are typically well tolerated by most people and generally much less harsh than chemotherapy options for cll and other cancers. I also like V+O because I think Calquence is a great drug to have in your back pocket. Some people can treat again with V+O if they progress, saving calquence for an even later time.
While your doctor has presented the two options as a choice for you to make, you might still press your doctor as to what choice he/she thinks is best for you. If there is any pattern I have seen develop, it’s that V+O is the preferred option for young and fit patients. Good luck, I think either choice will work well for you.
Hi Laabguy:
I understand your fear. I began my first treatment seven years ago at age 55 so we have some things in common. I vividly recall the hopelessness I felt leading up to both of my treatments. A couple of quick thoughts:
1) Science is moving quickly and you are being offered two fabulous options either of which will almost certainly put you in a deep remission. And more importantly, there are additional treatments in the pipeline.
2) Ask your specialist which treatment he or she would select for their mother if she was in your position. I’m pretty sure you will be told there isn’t a clear answer.
3) Realize that it most likely isn’t an either or treatment choice you are facing since you likely will need another treatment in the future given your relative youth. Hence, the treatment you decline today will probably be used in the future. Think of your choice as a sequencing decision.
I know the despair you are feeling but your life will almost certainly return to normalcy in a very short period of time. Mine certainly has. I walked my dog 5-miles this morning and I’m playing golf this afternoon. I’m going to dinner tomorrow night and attending a birthday party for my mother on Sunday. In between all that I’ve got yard work and a baseball game to attend to this weekend and a trip planned next week.
It get’s better. Trust me. I’ve walked in your shoes. The anticipation of treatment is by far the worst part of what you are facing.
Best,
Mark
I am currently doing Obinutuzumab and Venclexta. The infusions take about 5 hours, but are very mild and I actually enjoy my day at the hospital when I go. I go in at 8:00 and they attach an IV and take blood. Between 9:00 and 10:00 the blood work is back and the doctor reviews it to make sure nothing in the blood work would cause them to alter the treatment protocol. Around 10:00, they put me in a reclining chair, give me 2 Tylenol and begin infusing a steroid and then Benadryl. The Benadryl makes me sleepy. Those are the pre-meds. Then they infuse the obinutuzumab along with a saline solution. The premeds take 1 hour. the Obin takes 4 hours. I go to sleep for an hour or two and relax in the chair. They give you some food and drinks while you are there. It is a very relaxing treatment. When it is complete, you are still loopy from the Benadryl and the steroid makes you a little jumpy for the first couple of infusions. They run 6 cycles, but the first cycle consists of 4 infusions followed by infusions every 28 days. Mine were on 1/8, 1/9, 1/15, 1/22, followed by infusions in Feb, Mar, Apr, May and June. I began taking the Venetoclax on 1/29. They up the medication every week until you get to 400 mg daily. I did not experience any side effects until I got to the 400 mg dosage. I did learn to take Zofran 1 hour before taking the Venetoclax to avoid side effects.
The beauty of this treatment is that it is scheduled to be completed after 1 year, followed, hopefully, by a period of time where no treatment will be needed.
I did not want to choose an option that would keep me on a pill with so many side effects for years. I chose a path that would be completed in one year.
My advise is to choose the same path I did. I am very happy.
Thank you for this in-depth reply🙏
As you have been offered Acalabrutinib or Venetoclax I don't understand why you haven't been offered Venetoclax with Ibrutinib. Ibrutinib and Acalabrutinib are both covalent BTK inhibitors, as Acalabrutinib is acceptable for you, then Ibrutinib should also be acceptable but with slightly higher risk of heart issues that are strongly mitigated by the short duration of treatment.
Venetoclax with Ibrutinib is tablet only, no IV drips. It is 15 cycles, 60 weeks duration, 3 cycles longer than Venetoclax with Obinutuzumab.
Venetoclax does have an intense 5 week titration as the dose is built up, 20mg>50mg>100mg>200mg>400mg/day for a week at each dose. There are normally 2 weeks for 20mg and 50mg that have 2 additional blood tests, 6-8 hours and 24 hours after the first increase in dose at start of each treatment week (often Wednesday in NHS). If your ALC or lymph nodes are still high at start of Venetoclax there are more blood tests through the whole 5 weeks of titration.
I'm really surprised that I'm having to inform UK NHS patients about this option nearly 2 years after it was approved (May 2023).
I started V+O Easter 2023. As I was high risk for TLS the first IV of O was in hospital. As blood tests were weekly and dressing change could be done at the same time I got a PICC line for the first 9 weeks and 6 IV (5 doses). After that the PICC would have needed more attention with weekly dressing changes than I was getting with monthly blood test and consultation.
Skyshark, you might know the answer to this. I know the long term data are not in yet, but is there a consensus among experts regarding the chances of indefinite remission after first treatment with O+V? Do they hope for a percentage of patients, maybe with the right markers, achieving functional cure as per FCR?
CLL14 for V+O the last report I've seen was for 6 years in June 2023. There is no evidence of a plateau in PFS KM charts. uMRD4 status wasn't well retained with only 8% being uMRD4 or better at 60 months from end of treatment, down from 74% at end of treatment. 2% were still uMRD6, they may possibly have a very long remission. There isn't any indication of markers associated with retention of uMRD4-6.
My expectation is that from conversion from uMRD4 to progression takes about 2 years and next treatment will start as many weeks after progression as there were months from start of treatment.
There is no evidence of the "functional cure" that 50% with mutated IgHV obtain from FC-R. That would need about 14 % to retain uMRD6.
Enlightening, thanks.
Hello Neil,
I faced the same question a few months back.
So I created a post similar to yours (below) and received a ton of great information.
I opted for V+O and don’t regret it. I now get the infusions once a month and am at the maximum dose of Venetoclax. I have no issues.
What you’re going through right now is still fresh in my mind. And it’s not fun. But it does get better.
For a little perspective, a few months ago walking up a flight of stairs left me completely winded. Today, I’m back to playing tennis.
Best of luck.
Michael
healthunlocked.com/cllsuppo...
how was the V ramp up? were you hospitalized?
My Venetoclax ramp up went smoothly. I did spend one night in the hospital for TLS during my first infusion of Obinutuzumab. But it was managed very well. No problems.
Thank you Michael 🙏
I took V&O for my first treatment. I was never offered a choice. I can tell you it was a very easy treatment for me. I actually enjoyed my time during the IV portion. The first month seemed kind of time consuming. Then 1xmonth. It was over before I knew it. I worked right through it. Never missed any work accept day of treatment. Maybe that's why I enjoyed it. As for the V as simple as taking a Tylenol. Never felt sick or anything. Don't get me wrong I was scared as can be when I started. My blood work was in normal range after first week and has been for 2 1/2 years since. That has been my experience with V&O.
HiI had Obinituzumab and Ibrutinib in Nov 2020 when I was diagnosed at stage 4 at 56.... was in uMRD within 240 days where I have remained since. I live a completely normal live.
been on Acalbrutinib for 3 years now in remission so it works. Few side effects bruising and stay out of sun as can cause skin cancer. could be other side effects but I don’t have them. will also feel extreme fatigue at times not sure if caused by drug or general symptoms of CLL. good luck and make sure you have a good haematologist
Thank you
Hello Laabguy,
Although I was offered a choice, it was clear that V and O was the option my consultant wanted me to choose. It was the one I had been leaning towards too because of the fixed term duration. I found it ok. I had no side effects to speak of apart from the first infusion when I developed lower back ache and was cold. Was it the infusion or the air conditioning and the shock of sitting in a chair for a long period of time? I don't know.
I actually enjoyed infusion days! I always took a book with me but usually I fell asleep and relaxed! Believe it or not! The nurses in the unit were fantastic, attentive, reassuring and kind. We were fed and watered too.
One of my initial fears about the infusion was in case I had a reaction and no one noticed but there was a one to one ration and as I said the staff were so attentive.
Hope this helps. All the best.
Hi laabguy,I know how you you feel as I was in your position a couple of months ago. It was strange being given the power to decide on treatment without much knowledge nor ability to predict the outcome! And it was scary to make a major decision which would affect my life, and my family's life, without knowing how the treatment would affect me.
I was offered Ibrutinib, Acalabrutinib, Zanubrutinib, or Venetoclax plus Ibrutinib (V&I). Originally I was going to choose V&I for the time-limited aspect but upon reading about it, I discovered that there is a higher risk of bleeding with Ibrutinib. I have a history of retinal problems and was concerned about risking the health of my eyes (although my haematologist had never encountered this as a side effect but I didn't want to take the risk). There is a smaller risk of bleeding with Acalabrutinib so I opted for that and started two and a half weeks ago, one tablet twice a day indefinitely.
So far I've been lucky - I had 48 hours of unpleasant side effects (a cross between a bad hangover and COVID) but once that was done, I started to feel so much better. The lumps in my neck and groin have already shrunk, my tonsils have reduced (and I've stopped snoring apparently!), and I have much more energy. It's amazing actually.
What I hadn't realised was that for the first cycle I'd be given a cocktail of antibiotics, antivirals, anti pneumonia etc to take as well, at different times of the day. Remembering to take them all has been the hardest part so far, despite alarms on my phone going off every few hours!
If I hadn't been concerned about my sight, I'd have opted for V&I for the limited duration and also because it would have left the other single treatments as an option later down the line. My haematologist assured me that new treatments are being developed all the time and that by the time the Acalabrutinib stops working, there will be other, newer and even better drugs available.
There's no right answer to the treatment choice, it depends on your circumstances, but I recommend reading as much as you can about the treatments and searching this great site for information.
I wish you lots of good luck whichever route you choose.
I would opt for the venetoclax. I was on it for a year and have had 6 years of remission so far. Only side effect was very slight nausea about an hour after taking which was remedied with Belvita biscuits and a cup of tea.
I'm 2 yrs younger and was in the same situation last month. My 1st oncologist offered Calquence, which as explained below is a lifetime drug. One that also increased my A flutter risk (already have A flutter). I asked and received a second opinion just a couple weeks later. My 2nd oncologist agreed, that Calquence is an option and should remain a choice that I have. He also had some concern about the increase in A flutter chance.
However he also recommended the Obi-Vex treatment as a fixed duration drug. Basically I'm getting IV Infusions of Obi for Day 1, 2, 8 and 15 for the first cycle. Then I will add the second drug Vex in a ramp up stage. I'll continue to receive IV infusions for Obi for 6 total months and the Vex will remain a oral pill taken for 1 yr.
I just completed day 15. Very little side effects for me, with the exception of a pretty severe reaction on Day 1. Latter I found out this is common for CLL patient's with really high WBC's (I was just shy of 300K). But it's also a sign that the medication was working.
My counts after Day 8, dropped from 300K to 2.3k. Downside to this treatment, My neutrophils .8 and Platelets @ 50. So I do have a higher risk of infection and bleeding, vs Calquence at this time.
At some point my neutros and platelets should start to rise to safer levels. After tx is complete, I've been told by both oncologists, that I could go 6 months to 12 yrs without any additional treatments. In that time frame its always possible another medication or combination of medications will give me another choice, but for now I'm happy so far with my response to the Combi treatment. Again I've had hiccups along the way, but I just deal with them as they show up.
For the record, had a taken the Calquence, I could have continued my cruise in July. But with the Obi-Ven, I had to cancel that cruise. But I should be able to do it later in 2026. You can reach out via PM or here, if you have any questions, I've had a lot of questions over the last 7 wks in regards to both treatments and both doctors went out of their way to make sure I understood both decisions.
If you are gonna ask, why I went with Oncologist #2 over #1, #2 allowed me to do IV infusions via IV and not by a port. Had I chose to have a port, I would have had to stop working my current job (I'm 18 months away from my full retirement).
Good Luck and try to break things down instead of looking at 1 big decision. Weigh the pros and cons of medication, compared to your history and ask questions.
Thank you very much for your reply
3 years ago I had the same options ( also could have done 3 drugs in a trial). My doctor is a specialist at MD Anderson.
I chose Calquence. Had a few headaches but a cup of coffee cleared it up and after a few weeks no side effects. Went for my 3 year check up yesterday and ALL of my blood tests are in normal range!
It was explained to me that it’s basically a choice between the options as there was no wrong answer. Did I want to go to the hospital for a period or just take 2 pills indefinitely?
I chose to live as fully as possible now and just take the 2 pills. Yesterday I was told that CLL treatment has progressed to the point that we should expect a normal life expectancy
I upped my game in healthy lifestyle ( diet exercise, sleep, handwashing and being careful in cold and flu season) . We live a very active lifestyle after I adjusted mentally to having CLL
Best to you, no wrong decision here!
I just completed v&o and would recommend it
Hello laabguy
In many ways it is a personal decision depending on live style, but also your possible general overall health issues may put restrictions on which treatment to get. I choose as first-time limited treatment when there was not many around and glad I did, this saved the targeted forever treatments for later.
New to treatment
Acalabrutinib treatment going well
which Chronic leukemia
I’m scared of treatment
Change of treatment from ibrutanib to Venetoclax. Progression of CLL?
