Venetoclax and calquence combo for Cll - CLL Support

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Venetoclax and calquence combo for Cll

smirnof profile image
15 Replies

Anyone have experience with V and Calquence together? My husband has been on calquence 4 months but Haemotolgist states his bone marrow still 80 to 90% full of cancerous lymphocytes. Doc wants V and R but husband has had no issues with Calquence and would prefer to stay on it along with Venetoclax. Lymphocytes and WBC dropping steadily but hemoglobin low and still needs biweekly blood transfusions. Thanks

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smirnof profile image
smirnof
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15 Replies
Indolent profile image
Indolent

In this current era of Covid, it is my inexpert opinion that caution is advised on any and all treatments due to the potential to suppress our immune systems. The monoclonals (Rituxan and Gazyva) appear to be the most suppressive. Perhaps a pause, if possible, of a few months would be the smart thing to do. By then the effective therapeutics should be more readily available, thus giving someone a recovery path if a Covid infection does happen. Of course, this is something that should be discussed with your doctor.

Jackpot profile image
Jackpot

Hi Smirnof,

I was on A and V through a clinical trial in Alberta. I started on Acalabrutinib for two months and then did ramp up for Venetoclax. I had some minor side effects - heartburn, some muscle pains, slight headache for a couple of weeks, but they didn’t last for a long time.

My bone marrow was 50% infiltrated with those misbehaving cells before treatment started and I reached u-mrd after 13 months, which was the end of the trial.

I think it was a really good treatment for me and I bet it will be for you as well.

All the best,

Cindy

Hm15 profile image
Hm15 in reply to Jackpot

Hi cindy thanks for posting this. It sounds like it was a great treatment for you. CouldI ask what life is like after finishing this fixed duration treatment. Do you feel well? Is your immune system still very compromised and do you have to be very careful not to catch Covid? Thanks

HM

Jackpot profile image
Jackpot in reply to Hm15

I am doing very well. I never had great fatigue before treatment, so I was lucky, and am doing all of the things I love to do - walk, cross country ski, bike. I have energy and because I was in a clinical trial, I am monitored every three months with bloodwork and a checkup. Yes, I have to be very careful to stay out of Covid’s path. My immune system is compromised to some degree but my oncologist/hemotologist believes that I would fight it well if I do get infected (I have had three jabs). That said, I am not willing to take any unnecessary chances.

Take care.

Cindy

Jm954 profile image
Jm954Administrator

Four months is not long on Calquence to see much effect because, like Ibrutinib, it acts more slowly than Ventotclax. If it were me, I would wait longer and give it more chance to have an impact as it can offer very good long term control.

Jackie

Hoffy profile image
Hoffy

I did I plus V and did great. I am UMRD 3 years now. I was on for 15 months. I plus V.

Hoffy profile image
Hoffy

Be well,

Hoffy

Etoile7 profile image
Etoile7

Hi there, There is a new, MRD-driven clinical trial opening on March 31st, called “MAJIC”, and sponsored by Astra Zeneca to compare A+V to V+Obinutuzumab (similar to R), driven by the Dana Farber cancer institute in Harvard, and Sloan Memorial. Not sure if available in your country and if you can still participate if already under treatment, though, but you may want to check.

Peacekeeper profile image
Peacekeeper

20 years on this mission to clear the CLL up. After 2 rounds of FCR and 18mths Ibrutinib my marrow was at 92%. After 12mths V it was fully clear as was it at 24mths on reduced 3 a day and 36mths on 2 a day.Recent BMB actually said all cells showed correct maturity . Just letting you know V was a life saver for me.

smirnof profile image
smirnof in reply to Peacekeeper

Thanks for info. Was your marrow at 92% after treatment with Ibrutinib? Did you have any side effects with V? My husband is willing to try V but not V and R. He does a lot of heavy work -using heavy chainsaw, farming with large equipment etc and would be devastated if he had to sit around and do virtually nothing. Have you heard of many patients with CLL taking monotherapy of V ?Thanks

Peacekeeper profile image
Peacekeeper in reply to smirnof

Actually I was the first in my Aussie State to get V. I got it free under compassionate rules. Yes Ibrutinib reducedvthe marrow from 90% to 50% but failed at 18mths. It then returned back up.

Only side effects were the same as Irutinib. Reduced neutaphils and platlets taking neut booster shots 2 times a week. Sorry I have seen here others V alone and my doctor said he has many more. V covered under got support for 24mths here.

No fatigue though haemoglobin needed transfusions at start of V probably due to other issues as well. It has been fine since.

larrymarion profile image
larrymarion in reply to smirnof

I was on ibrutinib for 5.5 years until my tumor load was quite low, <5%. Then went on Venetoclax alone for 1.3 years. Achieved uMRD and haven't needed any meds for 16 months. And my hemoc estimates i will be uMRD for at least a year, maybe longer.Specific answers to your questions:

* No side effects while on V, though it is hard to tell if CLL related fatigue or V related fatigue

* I felt more energetic after stopping V, but i'm 72 now and taking a nap every day. The nap may have nothing to do with CLL or V but everything to do with my lack of exercise.

* My own experience, plus that of others i know, indicates that your husband will be able to continue his strenuous lifestyle.

* your husband's immune system will not bounce back to pre cll, pre ibrutinib levels. However, some evidence of more COVID vaccine efficacy if he's not getting ibrutinib. check with your doc on this, asking him about the LLS COVID vaccine efficacy study results. In my case i had the vaccines 6+ months after stopping all meds and my body was able to generate quite a few antibodies, even though my IgA, IgM and IgG levels are lousy (ask your doc for more info on these metrics). I'm part of a clinical trial studying this situation and some of the data are already public. That study shows taking Rituximab or other CD20 drug will inhibit vaccine antibody production more than ibrutinib, by the way.

here's a link to the report. cell.com/cancer-cell/fullte...

Italianpainter profile image
Italianpainter

Yes! I was on calquence and venetoclex and am now in a deep remission according to my 2nd opinion expert at Dana Farber, Dr. Matthew Davids. My primary onc is at Vanderbilt in Nashville, TN. And he is delighted with my outcome. I was initially on Imbruvica, ibrutinib that is but by 9 months my skin issues (panniculitis and blistering of hands) was recognized as 2 adverse reactions that happen to less than 1% of people on ibrutinib. I was switched to calquence with no further reactions. My venetoclex was reduced to 300mg because of low platelets and Dr. Davids said that is still a good dose and I did not need to go back up to 400 MG.If he can handle all the side effects, it proved invaluable to me. Good luck and happy new yr

I hope this helps. I have been living with CLL for 18 years and counting. Started on Calquence/Acalabruitnib mono therapy this past Sept. My doc says he wants me to stay on it until US approves concurrent use with Venetoclax. I had only one previous failed partial treatment with Bendamustine & Rituxin. I don't do well on monoclonal antibodies. But, I'm doing great on the Calquence mono therapy. After some initial dirrhea, rapid heart beats, headaches, and nausea during the first two weeks, everything settled down and I have very mild side effects now. WBC count has gone from 147K to 54K in 6 months. My anemia and fatigue are gone. My RBCs and HGB are back to normal. Because the CLl is probably strongly rooted in my bone marrow the Genetic lax may be me necessary to root out the disease once my WBC count reaches normal.

in reply to

That was supposed to say Venetoclax not Genetic lax!

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