Changing treatment

[doris33]

Could not take full dose of Ibrutinib because of side effects. Switched to Acalabrutinib but disease not controlled. Now taking obenituzimab to lower white blood cell count in preparation for Venetoclax. Has anyone else gone through this?

[AussieNeil Partner Founder Admin]

Along with a few other members, I'm on the ACE-CL-311 trial and am in the Acalabrutinib+Obinutuzumab+Venetoclax arm. If you select my avatar, you can look at my monthly reports of my progress. I've done very well and appear to have achieved a Complete Response.

Neil

[LovelyLilyGirl]

Hello,

I’m on obenituzimab/Gazyva infusions now since treatment started in March. Seven finished, 2 to finish in July. Yeah!! Brought my numbers back to normal very quickly. Started the Venetroclax in April.

No real side effects. I think it’s a miracle combination and am hoping to be like AussieNeil in March/April.

Beat to you

-Sally

[PhotonPal in reply to LovelyLilyGirl]

Hi Sally,

Wonder if you'd comment on this. I had my first Gazyva infusion recently and my neutrophil count went to zero for 4-5 days and I had shakes and variable fever, and spent a week in the hospital and wide spectrum ABX and Granix to raise my neutrophil count. I'm wondering how deep the neutrophil count went for other Gazyva patients after the first infusion? With my oncologist I'm working to figure out if I should re-start Gazyva or switch to another drug. My case was complicated because a week after the infusion I was found to have an infected gallbladder. Once that was removed, the fever and shakes stopped immediately.

Thanks

Paul

[LovelyLilyGirl in reply to PhotonPal]

Hi Paul,

I’m sorry you’ve had problems. Crazy CLL has a mind of its own. My only problem with the first 100 mg, day 1 infusion, was an allergic reaction that they gave me IV Benadryl for and it immediately cleared up. Now I enjoy the IV Benadryl because it gives me a little buzz and I sleep.

In February before I started treatment, my neutrophils were 4.2. After my 1st infusion, dropped to 1.2. Slowly increasing to 2.1, 2.3, 1.8. Kind of bouncing around on the low side of the range. I asked my doctor about my neutrophils being low as well as my white blood count which is 3.2, and he said at this stage of my treatment he’s ecstatic with my numbers. My red blood count, hemoglobin and platelets are all in perfect range. But ironically before my treatment, those three factors were always normal. My issue was a 250,000 white blood count. My last infusion is this Friday July 31. Then continue on Venetroclax thru March/April.

Best of luck on your treatment journey.

-Sally

[PhotonPal in reply to LovelyLilyGirl]

Thanks so much for your reply Iris, glad to hear things are going well. It's a really smart regimen, I think.

Paul

[Belkin123 in reply to LovelyLilyGirl]

I am so happy for you, Sally. I started acalabrutinib a couple of weeks ago and had to stop it it because of the headaches. I saw dr choi yesterday, he recommended some exedrin with coffee for headaches. I am going to try again.

Bella

[LovelyLilyGirl in reply to Belkin123]

I’m sorry you had side affects. Can be scary and frustrating. We’ve got Dr Choi and he’s the best. ❤️

Sending you hugs.

Sally.

[PlanetaryKim]

Hi Doris. I was switched from ibrutinib to venetoclax earlier this year (February) because of afib issue. It went very well. The venetoclax is going great, and appears to be controlling everything excellently. I have not yet added a monoclonal antibody like rituximab or obinutuzumab (Gazyva). Unknown yet whether I will. But I think this is a good move for you.

[LovelyLilyGirl in reply to PlanetaryKim]

Hi Kim,

Glad you are doing well. Venetroclax is my miracle drug.

Stay well

-Sally

[PlanetaryKim in reply to LovelyLilyGirl]

I am very impressed with it! Feel lucky to be on it.

[doris33 in reply to LovelyLilyGirl]

Thank you so much for the encouragement. Hope you stay well and safe.

[doris33 in reply to PlanetaryKim]

Thank you so much for the support.

[doris33 in reply to PlanetaryKim]

So glad your are doing well. Had 4 rounds of Obinituzimab before ramp up to Venetoclax. Had a bad reaction to Obinituzimab. Hope I never have to take it again. Had Retuxin before and tolerated that better. Still feeling exceedingly tired.

[bkoffman CLL CURE Hero]

Good combo with very deep responses for most. The reason for the obin 1st is to lower the risk of tumor lysis. Brian CLLSociety.org

[doris33 in reply to bkoffman]

Thanks. Did realize that obin was to mitigate tls. Treatment with this drug so far has left me feeling unwell. Maybe partly the rest of meds given to lessen infusion reaction

[Smakwater]

Hi doris333,

I was 55 years old, relatively fit, no co-morbidities, and unmutated IGHV when treated with O + V frontline in 2018 - 2019.

I perceived that my responses were good, as I tolerated the treatment relatively well, and I reached UMRD at 8 months post venetoclax. I experienced improvement in blood counts as well as quality of life within the first two months of obinutuzumab.

I am 6 months discontinued treatment, and, other than age related challenges I am still benefitting from the therapy.

JM

[doris33 in reply to Smakwater]

So good to hear of your great progress. I also have submitted IGHV, a poor prognostic indicator.

[Canuck901]

How’s the new treatment going

[doris33]

Thanks so much for asking. I am in ramp up mode for Venetoclax. Hard to drink so much water. Makes my stomach hurt. WBC way down now. Platelets still below 100. Feel even more tired than I did before.