Having to start treatment

[Mog811]

CLL with no mutations. Numbers are very high and I have no visible symptoms. I'm going to need to start treatment. The two options I am being told are Ibrutinib or Venetoclax. I am a healthy person not overweight I'm on no medication I'm 60 years old are there any thoughts on which medication. And has anyone had experience going from one medication to the other meaning like is there a better one to take first and the other option exists down the road thanks

[lankisterguy Volunteer]

Hi Mog811,

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I see you joined us today, and that you are 60 yr old in the USA. If you share more of your CLL history by adding to your profile, we can likely help better.

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Welcome to the club none of us wanted to join.

We often hear of newly diagnosed patients being pushed towards treatments by community hematologists that are not very familiar with CLL. So we suggest consulting with a CLL expert doctor before starting treatment. You can get a 2nd opinion for free, by video from home here: cllsociety.org/programs-and...

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You can find a list of CLL expert doctors here: cllsociety.org/newly-diagno...

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And here are videos and text responses from some of those experts on how and when they recommend starting treatment for patients like you:

healthunlocked.com/cllsuppo...

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If you want to start the learning curve to understand CLL use this long, detailed and rich list of links and explanations (bookmark it and come back often- it takes many of us weeks or months to digest it all)-

healthunlocked.com/cllsuppo...

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Len

[426hemi]

Hi Mog

I’m the same as you except I’m a little older, not overweight about 158. I jog, go to the gym and was asymptomatic and on watch and wait for eight years. Also on no medications. My WBC reached 380 which started to affect my red blood count. Hemoglobin and platelets dipped. It was time for me to pick a treatment. I chose fix duration treatment with Obinutuzumab and Venetoclax . I like the idea of being done in a year with treatment and the possibility of no treatment or drugs for six , seven, or Eight plus years. Obinutuzumab can be a little tricky your first infusion with infusion reaction. I was one of the lucky ones no reactions from Obinutuzumab at all. I drank 60 oz of water during my infusions. I also found that I felt great when I walked to the men’s room so I decided to do laps around the infusion wing. Had no reaction on the first day or any infusion days. I’m guessing I might have been a little lucky. I go for my last infusion this Friday the 13 th.,.. I’ve been on Venetoclax since November 11 and again no issues yet. I still drink a ton of water per day… any questions feel free to ask….. Dave

[DanBro1]

Speaking from my personal experience, Obinutuzumab monthly infusion for 6 months and Venclexta daily pills for 1 year placed me in uMRD. It has been 10 months since I completed my treatment regimen... I'm still in remission. I had mild chills and fatigue from the first 2 monthly Gazyva (Obinutuzumab) infusions. It was downhill from there.

[Mog811 in reply to DanBro1]

I am not that smart yet. What is uMRD?

[DanBro1 in reply to Mog811]

"Achieving uMRD in CLL means a patient has no detectable cancer cells, at a threshold of <1 detectable CLL cell per 10,000 leukocytes. CLL=chronic lymphocytic leukemia; CR=complete remission; MRD=minimal residual disease."

[SofiaDeo in reply to Mog811]

here's link to a glossary of common terms. Check out the Disease Status. This cllsociety.org site is great for information, in addition to the Pinned Posts sections here, explaining the basics of our disease:

cllsociety.org/resources/cl...

[DinosaurDad]

Another venetoclax/obinituzumab person here. Going today for my 6th and last obinituzumab infusion. Treatment is going well, very happy that it's driving the cll down with few side effects.

[LeoPa]

High numbers alone are not a reason for treatment if you do not have any CLL symptoms. Read up on the guidelines as to what symptoms are a basis for CLL treatment.

[Big_Dee]

Hello Mog811

I cannot give you a direct comparison between Ibrutinib or Venetoclax. My first treatment was B+R and now doing V&O. I chose not to do ibrutinib because I did not want to take a pill and adverse side effects for life. I am 75 years old and unmutated. Blessings

[scryer99]

Welcome Mog811.

I recently made a treatment decision and had a lot of conversations with my oncology team on this point. We are somewhat similar in symptoms at this point although I had maybe a little more spleen/lymph; see my profile.

Some things to consider:

1) the "ibs" (BTK inhibitors, mostly ending in "ib") are continuing medications - you take them until there's a good reason not to. The "axs" (BCL2 inhibitors, mostly ending in "ax") are fixed duration regimes - you take them and then you stop. There are some variations within all that which your oncologist can explain better than me, but the main thing is: do you want fixed duration or a more gradual ongoing treatment?

2) costs. Make sure your insurance plan/scheme does not have an opinion. The list pricing on these drugs is cost-prohibitive. Insurance should cover them both but best to be sure.

3) heart health. Some of the CLL medicines carry a small-but-not-zero risk of heart issues. That's a conversation with your doctor.

4) crossover / sequencing. I asked my oncologist the exact same question about which order and whether one precluded the other. My oncologist's response was that the data sets were not very large yet, but so far there is no indication that either treatment would make the other less effective.

Good luck to you. They're both medications with good track records.

And to answer the unasked question: I didn't choose either, though between the two I would have preferred the fixed-duration Venetoclax. I ended up in a clinical trial which makes sense in my case for a few reasons.

[Mog811]

Thank you. I see that I need to provide more in my profile.

[SERVrider]

Mog,

I was due to have Obinutuzumab (Gayzyvaro) and Chlorambucil but it would have knocked out my immune system just as Covid was anticipated to peak so my haematologist advised deferral by 2 months. She then was able to get me on a compassionate early access scheme for Acalabrutinib (Calquence) prior to it being licensed in the UK so it had, then, no trade-name, only its generic name. The use of Acalabrutinib has been superb with no adverse side effects and it controls my CLL perfectly so my haemoglobin and platelets levels are up to "normal" and higher than they have been for several years and the neutrophil levels are up to just over 3. The downside is that I will have to go on taking the Acalabrutinib tablets for life rather than getting remission through a 6 month course of Obinutuzumab and Venetoclax. Obviously, cost and insurance is not an issue in the UK as it is in the US where it will make a difference to your choices. Broadly though, it is a case of 6 months of somewhat unpleasant treatment or a lifetime of pill-popping but with no unpleasantness.