CLL. Gazyva and added Calquence. For how long did you get to enjoy?

[TomS2]

So I don't even know if this is polite to ask. But I'm just so curious about the Calquence that I took for 10 months and how long others are taking it.So my doc says that after the Gazyva infusions, and then the Calquence that started mid Gazyva, that once I'm done with these two medications that I will have 10 good years ahead of me. He said that I should never need to do chemo again for my CLL. I don't know what to think about that 10 year time line. Another said, "Oh 15" and the third was saying something else. But I figure if it does come back in 5, 10, or 15 years there will be another good medicine available. So I don't really think to much about it.

What I'm curious about is what others have been told on their use of Calquence. I understand that we are all different. But I'm just wondering because I'm so bored recovering and so curious on how long everyone has been told to use it.

It was a rough 10 months with the achy sore bones, sour stomach, and overall crappy feeling along with 16 hours of sleep a day. But I stopped the Calquence after 10 months of taking it, at 2 pills a day, two weeks ago. I go in for a CT scan and to see the doc this week. Overall my blood work has been good since the middle of the treatment.

I don't know if this is an intrusive question or not. I do appreciate those that answer. I'm just glad to be done with treatment and am slowly starting the climb back to being a healthy 60 year old.

One last thing if any if you are feeling blue about having to go through chemo treatment. I was feeling sorry for myself in the middle of getting my Gazyva infusions. Then an older gentleman came in and walked up to where I was sitting and said, "You are in my spot." I was all hooked up and thought, oh boy, I don't want to be rude. So I asked him if he'd like me to move. He replied that he was kidding. Then he proceeded to talk my ear off for the next few hours. Turns out he had pancreatic cancer. The weight of my feeling sorry for myself just lifted off of me and has never really (hardly, any) returned.

So, I just am hopeful that I can return to somewhat of a normal life for awhile. If anyone here ever needs to just talk, I'm listening. I know others just don't get it. Just be good to yourself when you can and ignore the noise.

Whoops, back to how long you took, or will be taking, Calquence. Thanks. Tom

[cajunjeff]

Hello Tom. I have been on calquence for 5 yrs, ibrutinib for 2 years before that. MRD negative remissions on calquence only, even when taken for yrs, are not common.

I have never heard that adding Gazyva to calquence will give anyone a ten year, med free remission. That would be wonderful news, sign me up for gazyva today if your doc is right about that.

Good luck with your treatment, I hope you will let us know how it goes.

[AussieNeil Partner Administrator]

Tom, do you know your prognostic markers? How long were you in watch and wait? I agree with cajunjeff about the typical remission times after taking acalabrutinib (Calquence) and obinutuzumab (Gazyva), but if you are IGHV mutated, have other good prognostic markers or had a reasonably long time in watch and wait (say 5+ years, depending on how long you had CLL undetected), then that makes what you heard from your doctors more reasonable.

I finished Calquence + Gazyva + Venclexta (venetoclax) treatment just over 4 years ago after starting it in late 2019 and my lymphocyte count is still normal and I have no other signs of CLL/SLL. Thankfully I have good markers and the addition of venetoclax, a very effective targeted therapy greatly helped.

Neil

[Indie1234 in reply to AussieNeil]

Hi. Neil. I’m about six weeks into treatment now (O & V). I still haven’t been able to get my FISH results. Apparently the only one that can access the results is the Haematologist who ordered it. I never see him, and the Dr I see can’t access it. Guess I’ll just keep trying.

Hope you are doing well Neil.

Indie

[BigfootT]

TomS2, You bring up a good point about the Pancreatic cancer patient and their cancer journey vs. ours. My dad died of pancreatic in 10 weeks from diagnosis and my mom died from small cell lung cancer in 3 months from diagnosis. I'm sure things are better with diagnosis and treatment if they were diagnosed today, but still I remind myself of their very rapid declines whenever I start to feel down about my CLL. Bigfoot

[GLB55]

Hi TomS2

You nailed it regarding others not getting it. Many years ago I boiled it down to this in regards to any cancer…..there are only 2 kinds of people out there, those that get it and those that don’t (and I’m not talking about about getting cancer, it’s in regards to understanding all the ups and downs, the ins and outs)

Wishing you an everlasting remission

GLB

[Pageboy]

Hi, I have been on Calquence for 4 and a half years. I also had Obinutuzumab (Gazyva) infusions x 6 after around 18 months just on Calquence. My doctor says the soonest he’d consider me coming off is after 5-6 years. Even then, it would ultimately be up to me as there is no long term data to answer the question how long we might stay in remission for. (Though my doctor does talk quite excitedly about ‘normal life spans’ for many CLL patients these days). I am very lucky that I have/had very minor side effects from either drug. Of course, that could change, but so far I’m being advised to keep going, though I reduce the dose to one pill daily through winter months. Hope that helps x

[Mining_Guy]

Hi Tom, you and I are both quite rare in that we are on Acala following Obin infusions. So, rare, I think we may have the same doctor. I started last May and was treatment naive so the Elevate TN study seems to apply best for me. In my case, my doctor will do a 1 year uMRD check and may take me off Acala for a while if results are good. If not, there is a new bi-specific antibody trial that my doctor thinks will obliterate any remaining cancer. My lymphocyte counts are now stable at 1.8ish down from 280 at start of treatment. I hope your doctor is right about remission but the Elevate TN study shows a number of patients are doing well and has not been going long enough to confirm 10 years but could quite possible be the case.

[Skyshark in reply to Mining_Guy]

ELEVATE TN they only looked at the 66 that were judged to have a complete response.

MRD in ELEVATE FD at 6 years

[Skyshark in reply to Skyshark]

The numbers reaching CR/CRi in 6-years for ELEVATE TN trial is low. Only 41% of 36% were uMRD4, ~15% overall. For comparison trials of Venetoclax + Ibrutinib have about 50-55% at CR/CRi and uMRD4 by end of treatment at cycle 15. Venetoclax + Obinutuzumab 75-80% reach uMRD4 but only about 55% are CR/CRi after 12 cycles of treatment.

ELEVATE FD 6-year build up of ORR and CR/CRi

[Mining_Guy in reply to Skyshark]

I was looking at Elevate TN. What is the FD leg?

[Skyshark in reply to Mining_Guy]

It is TN, as shown by the slides "ELEVATE-TN 6 year", for some reason I was thinking of CAPTIVATE FD.

[B13532]

My hubby on it since last Nov & our oncologist said he is on it for life 2 pills a day. So surprised your doctor said you're done. My husband has had no IV nor transfusions. However he is 84.