Hi about to start treatment and have been asked to choose between Venetoclax and Obinutuzumab orAcalabrutinab . Have been told both treatments are equal?
was wondering if anyone could share their knowledge and experience. I am thinking about going for Acalabrutinib as no need for hospital stays etc
Quite nervous as I tend to over react to medications and other things which is an offshoot of having ME
Hope you are all doing well out there
Good luck with whichever option you go for, we know they are both great options. But, I would expect my consultant to choose. I do not regard myself has remotely competent to take such a decision.
I have tried all of the above for my CLL. I did get a couple of years remission with Venetoclax and Obinutuzumab together, but Cll appears to be retuning.
How long did you stay on the Acalabrutinib? I have been told it is long term as long as you tolerate another medical person outside the hospital said it should be two years then you stop.
I am sorry your CLL is returning it is the nature of the illness and varies from person to person. I wish you well with whatever treatment you have. 🤗
I was not on Acalabrutinib very long, less than a year as numbers were not improving. Want to stay off meds as long as possible.
things to consider:
fixed duration vs ongoing (V is better)
hospital visits, and attendant impacts on work (AO is better)
outcome record (pretty similar I think but your oncologist should know this)
risk of heart issues (V is better)
risk of tumor lysis (AO is better)
side effect profile (your mileage may vary)
cost impacts vs insurance (depends on your deductible setup but V likely better
downstream options if it doesn’t work (my understanding is there is no clear indication )
As my oncologist told me: there are no wrong answers given the treatment options available today.
I ended up picking “neither” and going the clinical trial route.
Thanks for the information, difficult decision but love they why you set out information. I was just asked to choose.
Treatment is being started because of spleen size, bloods and nodes stable
Good luck on your journey 🤗
Well, that’s a good reason to start treatment. Having visited the ER the with spleen issues and entering treatment with a 10 cm below ribcage spleen, it’s not a lot of fun.
Glad the risk layout helped. It all comes down, I’ve found, to “buyer values” — which of those things matter to you and which don’t? Everyone is different on that score.
Both work well. Acalabrutinb has fewer side effects but is long term usage. Venetoclax gets quicker results and is taken for a one or two year period before taking a vacation from meds. Whichever your CLL Specialist starts you on one can always switch to the other later.
Thank you so much .🤗
“You were told, "both treatments are equal"? If that were the case, there would only be one treatment.”
Jammin: Your statement is incorrect. Remissions may be similar(equal?) but these drugs work in different ways. As a result, they can be used sequentially so it is very positive there are two drugs. Also, they can be used in combination to potentially deepen a remission. I think Sunshine’s doctor is telling her that based upon current data he/she cannot tell her which option is best to start with. As time goes on and more data accumulates, doctors should be able to make better choices about which treatment options work best for individual patients. Unfortunately, this process takes time.
Best,
Mark
I began treatment with Acalabrutinib in August 2021 and have been absolutely fine. I haven't had any side effects or I'll effects which I could put down to the Acalabrutinib. My blood numbers at the last reported check were considered normal ranges. I had blood taken last week and will have a telephone consultation tomorrow. I was given Allopurinol for the first three cycles and noticed early morning headaches, these were soon cleared with a cup of strong tea or coffee. I also take Aciclovir and Co Trimoxazole. After an accident at home last June, it was thought that I may have intermittent Atrial Fibrillation. Although I was told that I didn't need medication for this, I choose to continue with the Apixaban as an insurance.
I wish you luck and good health. Please let us know how you progress, I have followed you. x
Thank you for your reply I am most grateful the more feed back there hopefully will help with my decision. The two treatments I have to choose between sound much about the the same apart from length of time taking. Also wish you good luck and good health 🤗
also on acalabrutinb and Co-trimoxazole. Had no side effects. Been on acalabrutinb for 2 1/2 years as part of a trial. Couldn’t be more grateful. For me, it is working well at present. After one year I was in partial remission which is as good as I can expect. GOOD LUCK
So pleased for sounds very positive 😊
Did you actually get your consultant to say you were in partial remission? I asked about remission and was told that, that would never happen. If they declare remission and stop the Acalabrutinib, she said my disease level would rise again very quickly.
I was asked on an airline medical form if my cancer (oh that awful word) was in remission after I said that my blood numbers were considered in normal ranges. The thing is, non medical people just don't understand the difference between Chronic and Acute!
I have a consultation tomorrow and will try and get a letter saying that my CLL is stable and not likely to cause problems so long as I take my medication.
I have not started treatment yet, this will be my first treatment and I have been given the two options to choose from.
That is the one reason I am looking at the V&O option because it is a fixed term of treatment then you come off treatment and hopefully have few years treatment free.
Is there always a high risk of infection while taking Acalabrutinib or does the risk decrease once bloods improve. ? I am not finding the answer.
Mine field
With respect to infection risk, in general*, this is broadly reflected by your absolute neutrophil counts and your immunoglobulin/antibody counts. Venetoclax is more likely to impact your neutrophil counts than acalabrutinib, but all CLL treatments can cause neutropenia, sometimes sufficiently enough to require G-CSF boosting injections or a dose reduction (or for venetoclax, delay(s) in the ramp-up phase) and for obinutuzumab, rescheduling of infusions. It's difficult to do a direct comparison, because venetoclax + obinutuzumab achieves in about a year (reaching uMRD- undetectable minimal residual disease), which acalabrutinib struggles to do in four or more years, if ever. Both treatments also unfortunately wipe out your healthy maturing B lymphocytes. This is why it is important to get up to date with at least your important vaccinations before starting treatment, leaving at least 2 weeks before your last vaccination and starting treatment. This allows time for your B lymphocytes responding to the vaccination to become memory B cells and plasma cells, which are significantly less affected by treatment drugs. Your immunoglobulins tend to trend down during treatment, so your protection from vaccinations and illnesses you've previously beaten, like chicken pox, wanes. That's why you would be wise to be on an antiviral prophylactic for shingles (Herpes Zoster) during treatment. Note that you won't produce antibodies from vaccinations or infections for at least a year after your last obinutuzumab infusion. Your specialist might put you on some prophylactic antibiotics, during and for some time after you finish treatment, depending on your infection history and lymphocyte counts.
*It's difficult to compare a fixed term treatment with a maintenance treatment even with a head to head clinical trial.
Neil
Neil,Thank you for being so darn ( more like wonderfully) informative. You are so valued here! What would we do without your imput.
Thank you
Neil, Why would'nt memory B cells be effected by treatment. They are after all B cells and these treatments obliterate B cells.
Fair point. I've edited my sentence about the resilience of B cells to treatment to "This allows time for your B lymphocytes responding to the vaccination to become memory B cells and plasma cells, which are significantly less affected by treatment drugs."
The degree to which B cells including CLL cells, are affected by various treatments, is determined by how active the B cell is, along with changes in internal pathways and the expression of target surface molecules. CLL cells over-express BTK and BCL-2, so are more susceptible than healthy B cells to BTKi and BCL-2i drugs respectively. Also, plasma cells don't express CD20, so aren't affected by obinutuzumab, rituximab and other anti-CD20 monoclonal antibodies. This improved survival of mature B cells, is why it is possible to develop antibody protection from vaccinations while on BTKi drugs for example and why we don't need to have all our vaccinations repeated after we finish treatment. If you have immunoglobulin testing done before, during and after treatment, you'll typically find that IgA, IgG and IgM continue to be produced, though the output of the latter is likely to be more reduced. (Note that Acute Lymphocytic Leukemia (ALL) has a 75% cure rate in children with chemotherapy, which I expect is because unlike CLL, the ALL cells actively take up the chemo, while the CLL cells can remain dormant for a long time. They won't be susceptible to DNA corruption, triggering apoptosis, unless they first divide.)
Neil
Thank you for the great explanation.
Yes it's a minefield for sure! I don't know the answer about more risk of infection. I have a consultation today so I will and remember to ask my Dr. I was told (I think) that our bodies remember immunity prior to medication but won't accept anything new. Hence, no antibodies for Covid after six jabs. I did give a blood sample last week for a full antibody test but don't know if the results will back yet. Will report back this afternoon.
I feel lucky beyond words to have an outstanding consultant and expert in the CLL field. He volunteered that I was in partial remission one year after I started acalabrutinb and again another year later. I am still feeling well with no obvious signs of CLLso am hoping I remain in this partial remission. For me, acalabrutinb has been wonderful, so far🤞
Thank you, so pleased sounds positive.
Hi don't know if you have seen my post from yesterday.
Consultant happy and blood numbers are good. I asked about partial remission, she said that I am stable and could consider myself in partial remission!
My antibody test was as expected negative.
So we go on, we take care, wear our masks and hopefully stay well.
Alice
Hi
Great news, I did see your post and thought I had replied. So very pleased for you.
I have decided to go with the Acalabrutinib. How long have you been on it? I have heard to differing opinions, one says two years then come off another is as long as tolerated.
Are you shielding or do you just take extra care.?
Once again great news about how well you are doing 🥳🥳
No worries, just wanted to make sure you had seen the post.
We don't actively shield but we don't have visitors in the house, unless they have tested clear, don't have coughs or colds etc. We wear our masks whenever we go into shops and recently when we went to Spain, we wore FFP3 masks all the time we were in the airport and on the flight.
Take care x
Hello, Sunshine,
I have been on Acalabrutinib in a clinical trial setting since 2015, and it is just starting to fail. It brought my lymphocytes down to within close to normal limits and reduced the size of my lymph nodes within 12 months and kept them there until last year. It was considered a partial response, since some of my lymph nodes were still measurable in my abdomen, I had a lot of side effects ( headaches, myalgia, and joint pain, mostly), but overall I am very grateful for the experience with this drug, because I have Deletion 17P and it is, fortunately effective on this genetic defect . I will be starting the Venetoclax next month and I hope it works as well. A large percentage of the people on this treatment are able to stop after two years, or at least take a vacation from it. I hope I am one of them!
I was told it should be stopped after two years by a medical professional but I have been told by the hospital that’s not the case you keep taking as long as you tolerate . Going to ask again .
Hope you do well on your next line of treatment , it supposed to be a good one . Are you taking it on it own ?
This is my first line of treatment and I will be taking it alone as far as I am aware. Hope you are doing well and continue to do so
I just finish 6 months of Obt in sept 22 started alac 2.7.22 6 weeks. before starting the obt. My infiltration of bone marrow at 80 to 90 percent. Im in my second line of therapy after relapsing. The start of obt can be bumpy but it does it job. Depending upon how much tumor burden you have can have effect on your painful times those few months.but as time has passed and i find i have much more energy than before its well worth some of the bittersweet taste we all get when it come s down to taking the meds...and my protocol is 2yrs on Alc then stop.
Thank you so much. It sounds like you are doing well 😊
The main reason for me starting treatment is the size of my spleen, bloods are stable and nodes there but consultant said there not bad all quite small. Don’t feel unwell , apart from flares ups of ME/CFS which I had many years before CLL.
If I go for the Alc option think the idea is to keep me on it as long as it is tolerated. Nurse said I should feel better after taking it and I told them I feel ok, which is true.
This seems like a great place to come . Thank you again . Wish you good luck and a smooth road
Hi
I had 6 cycles of O with Ibrutinib then moved to daily acalabrutinib... was in uMRD within 243 days. Still in remission after 18 months a d live a full pre covid , pre cll lifestyle
Thank you 😊
I agree more information would of helped.
I have just started O and V treatment. Just have had 2 days of treatment so far so early days! My haematologist allowed me to research alcabrutinib , obtinutizab and Venetoclax. Ultimately I weighed up pros and cons. The O and V treatment was recommended for me because it was a fixed period of 1 year and then hopefully go into remission for a period of time with no medical intervention. The A treatment I understand is longer term. Good luck with your treatment.
Good luck and thank you
I can share what my Dr at Moffitt and my Dr at Florida cancer Specialist shared with me based on my situation. They preferred the Venetoclax and Obinutuzumab because your treatment is for a year or two and then you may get a break for 2-3 years. Acalabrutinab you take indefinitely.
We haven't decided yet. I look at it like this. If I can get 2-4 more years there will be even more new treatments and 2 of the years I wouldn't be on one. Not a factor in deciding however, $900 a month for Acalabrutinab (my insurance) isn't a walk in the park.
Good luck!
Thank you it is quite a decision isn’t it. Hope all goes well for you I am still swinging from one treatment to another another now 😂😂 . Wish you well and good luck 🤗
My husband is on V/O (starting cycle 4 this week). He too was given a choice but with the doctor endorsement of V/O. I don't know anything about Acalabrutinab however, I will say (based on sample size of one) that if you already have a tender GI tract, Venetoclax seems to aggravate it.
I went through this recently and unfortunately there aren’t any easy answers. Sometimes doctors just don’t know so they say pick one. Often the treatment selection is based upon some of the factors Scryer99 has outlined above not about which treatment will provide the longest remission, etc. because that information simply isn’t known. It is frustrating but that is where we are today. As time goes by and data builds it is expected doctors and patients will be able to make more informed decisions.
Thank you so much, it is a mine field. Have just been reading that taking the A tablet long term may not be a good idea and should be stopped at 18 as toxicity could become high , and risks increase. There was a lot more to it but it seemed to be something that is being looked into. Don’t know if all the reading is good sometimes you just have to go with it and listening to other’s experiences can help.
What decision did you make? I wish you well😊
I do appreciate your confusion. There is a lot to consider here. There are issues with any treatment regiment. My suggestion for you is to take into account all that has been written here and see if you can schedule another appointment to sit down with your doctor and ask your questions. Don’t be afraid to ask “what would you decide if you were me and why?”. I wish there was an easy answer but the information is not clear and we are all different. Try writing your questions down before you go to your next appointment so you don’t forget anything.
I wish you well!
Mark
I asked that question they would not answer lol
I started O&V in October. I have had a very positive experience. I haven't had any side effects and have only missed work the days of infusion. I have energy and do everything I want to do. I know we are all different but my experience has been excellent with O&V.
Thank you 🤗
My husband treatment has all three and is doing fantastic (he is in a Dana-Farber study) - he started with Obinutuzumab that shrunk his lymphnodes, and 28 days later he started acalabrutinib. He completed all his obinutuzumab infusions and is now on venetoclax and acalabrutinib (I call these his angel warriors).
Thank you, sounds like your husband is doing well wonderful
I hope this brings you comfort
I had great success with V+O. Only side effect was some digestive issues on V. I am still uMRD 15 months post-treatment.
Just a reminder to make sure you are up-to-date on all vaccinations prior to starting treatment.
Wishing you an uneventful journey whichever path you choose.
Hello Sunshine2422
Doctor's choice of treatment options has changed in recent years. It used to be most common choice was longest remission length. I have watched several CLL webinars where patient's number one choice is limited time treatment options. I choose V&O because it was time limited and did not want to endure any possible adverse side effects forever which would occur with inhibiter drugs requiring lifetime use. Some patients have no choice due to some drug intolerance, your doctor should have best advice on that. Blessings.
Doctor has left choice to me but did say at one point if I choose V&O I would have the other option as next line of treatment. With Covid still around and hospitals being a risky place I might go for A not sure lol 😂 doctor just me to it. Did mention the fact that I did not want to live with lifetime of side effects and was told they pass in a number of weeks. Is remission with V&Q about 3 years?
I wish you well on your journey and a long remission
I too was advised to start treatment due to a very painful & enlarged spleen plus my WBC approached 200k. I had been w&w for almost four years.
I welcomed and opted for the (approx) 1 year fixed duration O & V, and regret zero about those meds or course of trestment. Luckily my specialist got me into an O & V trial which covered the insane costs of those meds.
Neither medication involved a hospital stay.
I went to the infusion center for the O and was there for a good part of the day; it's a slow slow drip, plus they like to monitor you for about an hour after the last drip drops. I also opted to have a port installed which made the administration of the O quite simple.
Thankfully no sidefx from either drug. I cmpltd the course of meds, O & V, in 12/2020 and so far all is well.
Good luck.
For me Acalabrutinib has been successful. If you choose this one, wishing you the VERY BEST.👍😊
I just started the V only a month and a half ago, I decided not to take the O with it. I have cardiac issues so if you have any cardiac issues, you won't want to take the acalabrutinib probably. Also, I am only supposed to have to take V for two years so I prefer to not have to take medicine continuously.
Obinutuzumab has definitely lost its shine as a treatment drug during the pandemic. That's because as you appreciated, you are unable to produce antibodies in response to vaccinations or illnesses for at least a year after your last infusion, plus you have the increased risk of exposure to SARS-Cov-2 from your 9 trips to the hospital for infusions, if you aren't seeing your CLL specialist there concurrently on some of those visits. Obinutuzumab however does improve your chances of achieving uMRD (so potentially giving you a longer remission), plus theoretically, it should reduce your risk of developing resistance to venetoclax. Both of these factors increase the likelihood that you'll more likely be able to repeat the use of venetoclax in a future treatment.
It's a tough call at the moment, particularly when we are running out of COVID-19 prophylactic and treatment options. I can well understand your choice.
Neil
Yes difficult choice due to Covid and the fact like many I have no protection and I have been told I have to spend to nights in hospital at the start of O and then trips for bloods. Would also need to be admitted for the start of V and then over night stays for ramp ups.
Difficult times for people in our group as Covid still high risk in medical settings , particularly as they returning to normal. A doctor posted about a 30 year old lady who went in for Covid treatment a few weeks ago caught Covid there and did not come out. Bit more needs to be done to support vulnerable groups
That is the appeal not having to take medication continuously but I have been I have to have both V&O
The above option involves a lot of hospital time at first. Big decision
I hope all goes well for you🤗
I had to start treatment in the summer of 2020 because my platelets dropped to 30k. My doctor gave me a list of choices including both a BTK inhibitor and O and V. Since I was in my early 50's, I picked O and V because of the fixed duration. My treatment ended in September of 2021. My umrd test showed umrd to 10 to the negative 6. I did have some GI issues. My tastes buds changed and have got even picker.
Must be nice to be off medication😊
it is
Hi Sunshine,I listen to many webinars by USA CLL specialists. The general consensus is that Acala + Obin or Ven + Obin are very similar for PFS and reaching undetectable MRD. Note that both include Obin. Acala alone is very efficacious but adding the Obin shows a benefit with the data of 4 years of followup, and some patients are stopping the Acala so as to save it for a future treatment course, if needed. Here's the EXCEPTION: if you have del 17p or TP53 mutation, the experts prefer a BTKi treatment that is continuous for concerns that "turning your back" on those prognostic mutations could be problematic. I am not a medical professional so I recommend that you talk with your hematologist about your specific prognostic indicators.
Thank you very interesting reading. I have been offered V&O and Acala on its own and told basically both have the same outcome and have to let them know in next couple of weeks what my choice is. Also told the one I don’t choose will be my next line of treatment
I started treatment about a year ago. My numbers didn't really call for treatment but my spleen and liver were enlarged and causing some issues with eating. I discussed treatment options with my doctors and determined that Venetoclax and Obinituzamab would be best for me. I am on the younger side of people with cll and I wanted to try something that is a more aggressive treatment now and save a BTKi for later in life if I need it. My hematologist decided to do my first infusion over three days because of my WBC which was near 400,000. I had an infusion reaction with the first infusion but it was minor and never happened again. I didn't need any hospitalization for either of the medications. They did watch me closely in the beginning and I was drinking a gallon of water a day for the first month of treatment. I did need three Neuprogen shots in June and a couple of one week delays in infusions and Venetoclax but it has been fairly uneventful. If you would like to see how my numbers were for most of my treatment, they are in my profile. Feel free to ask any questions you may have.
Thank you some wonderful people on here. Pleased things went well for you. My understanding is V&O can give you about 3 year’s remission which is great
I am hoping for that long or even more. As long as they allow it, I would do this treatment again when the time comes for my next treatment. I know there is a clinical trial going on now repeating V&O for people that had it before and are using it again. Hopefully it will show that it is as effective the second time of usage.
I am so pleased for you 😊
Hi Sunshine 2422, I tried the combo of O+V a few years ago and my body couldn’t handle it. I got very sick with pcp, a pneumonia and had a really bad reaction with my first treatment. I stopped all treatment for a few years and started Acalabrutinb this August. I had a choice to do the O+V again and be done with treatment after a year or live in harmony with Acala indefinitely. I chose Acala this time and have been very happy with the results and less side effects. Everyone is different and my experience may not be yours but thought I would share my journey. I’ve read others have done really well with O+V treatment and I’m very happy it worked for them.
All the best in your decision and outcome.
I had the same options last summer, and chose V & O. Started treatment in Nov. Now in my 3rd cycle. Consider if and when you can spend a day a week for first eight weeks on this protocol. Consider out of pocket costs for options (which vary depending on insurance plan.) Consider other health issues that may affect tolerance of treatment, such as heart or GI issues. An important issue is how you feel about taking meds for CLL indefinitely vs the time and effort of V & O for about a year. Finally, consider what you will do next if you don't tolerate or fail the option you choose. Odds are good you will do well either way. Wishing you the best.
I can only speak to V and O. I thought the combo was well tolerated and I loved it being a shorter term option especially for my first time at this stuff! Feel free to message me with any questions if you go this route -
I was given the same choices by my CLL specialist, who is a top CLL Dr. She couldn’t tell me which to choose but promised (when I cried about choosing!) that she would never give me an option that was not excellent! She thought it was important to choose based on lifestyle. Because I hate side effects, I knew I didn’t want the long term Acalabrutinib. I chose V+O. This was less convenient, which would be a deciding factor for others. And as others mentioned, I had frequent visits to the hospital for my O infusions during a pandemic! But I am doing great now and I’m glad it’s done! I wish you the best.
NW
I agree with your advice here. My CLL specialist noted two potential treatment options, 1) a trial with Pitrobrutinib or Ibrutinib or 2) O & V. He gave his recommendation of the trial, hoping I would receive Pitrobrutinib (which I did) but also because trials are important.
He advised against O & V for two reasons both of which had to do with the “O” treatment. 1) He remains concerned about being exposed to Covid in the hospital and 2) He was aware that we care for our adult son with disabilities and thought my going into the hospital for infusions would be very intrusive.
I appreciated his recommendation since he is the expert and that he shared why he made the recommendation.
Patti
I was given the same choice for my second treatment. Had 6 months FCR in 2017 followed by 5 years full remission ending last year.I considered all the pros and cons of the two options but the clincher for me was the need for hospital visits with V&O. I'm a tragic needle-phobe. Despite hypnotherapy, visits to a psychologist and sedative drugs, I still find hospital treatment very stressful and distressing. For me, avoiding those negative mental health impacts is very important for my general well-being, and ultimately my physical well-being.
My haematologist supported the reasoning behind my choice.
Started on Acalabrutinib monotherapy 8 days ago and so it's early days for me. So far my swollen lymph nodes have shrunk noticeably (surprising quick). Only side effect so far is occasional, mild headache that disappears after a cup of coffee. I feel great.
I'm happy with the choice I've made but do agree with other posts, a finite treatment period such as with V&O is attractive. However, I don't believe either choice is "perfect".
Good luck with making the choice that's best for you and I hope you respond well to the treatment.
Regards
Andrew
PS My blood counts have not yet been reviewed since starting Acalabrutinib
Thank you for sharing. This will be my first line of treatment and have decided to go for the Acalabrutinib for similar reasons. I do not really want the hospital admissions at the moment which I have been told would happen with the V&O option as I would need to be admitted at the start of both meds due to TLS risk. V&O also involve more trips to hospital . Consultants have now told there is no wrong choice because both options are good and work equally well and said no evidence at present to favour one treatment over the other. Was a difficult choice because do like the idea of time limited treatment but was told which ever one I did not have would probably be my next line of treatment
start of treatment 
Now going to start treatment 
I am new here and about to start venetoclax/rituximab treatment.
To start treatment or not? Please. 
