I am so happy to report that I am on my 3rd week of the ramp up phase with Venetoclax. Like so many people, I was very concerned (frightened) about the possible side effects. Fortunately, I have had none to date. I'm writing this for all of the folks who are apprehensively getting ready to begin treatment. I'm on Gazyva + Venetoclax. Very slight issue with the first Gazyva infusion (just some flushing which was relieved by pausing the infusion for 30 minutes). No problem with subsequent infusions (to date). Began the Venetoclax ramp up 3 weeks ago with no issues. I did follow others on this site who recommended plenty of water each day. I am ingesting at least 3 liters throughout each day. The Venetoclax is supposed to be taken with a meal at the same approximate time each day. Many people on this site suggested waiting 30 minutes after the meal before taking the Venetoclax. I have been doing that religiously, and it has worked great for me. So far I am a big fan of this treatment both for the results and the lack of ill effects. I wish you all well as you begin and if I can share any information, please respond.
All the best,
Ron
Written by
ronsolo306
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It is remarkably helpful to be able to read this message about "No Issues."
It would be easy for a browser to the HU/CLL messages to presume that side effects such as nausea and general discomfort are inevitable. Only with a balancing message such as this one from ronsolo306 can one get an accurate sense of the impact of starting any new medication regimen. Thanks for this update.
Great news. This is a great combo the Gazyva debulks and cleans up the nodes and the Venetoclax cleans out the bone marrow. So fantastic results from this combo in a short time and very well tolerable.
Stay strong 💪 and the success Comtunues
Everyone is different some people need G-csf support while others do not until the marrow is able to function better on its own.
Neutropenia is super common on Venetoclax I read in some trials it was over 70% in 12-18 months
Great news! I completed Venetoclax ramp up last week - now on 400 mg - and also no side effects. I have been vigilant about drinking a minimum of 56 ounces of water every day.
I had a slight coughing reaction during Gazyva cycle 2 which was controlled with additional steroids and Benadryl. Other than that, it has been smooth sailing for me as well.
Will be going for a CT scan in a couple weeks to check that my lymph nodes are shrinking.
That is very reassuring to hear Ron. I am doing well in my 2nd week of Venetoclax ramp up with outpatient monitoring for TLS. I did have an infusion reaction with first dose of Obinutuzumab (common) ie. flushing, rigors but all subsequent infusions have gone well. I did develop a cough which is improved and neutropenia, also improved with a single dose of Neulasta. (I’ve been told to expect more neutropenia on the Venetoclax). I wish you continued success as you move towards your full 400 mg dose of Venetoclax.
I am so happy you posted! I start Venetoclax on Monday, 11/2 😳. Extremely anxious about beginning treatment as I had reactions to Rituximab.
I have been drinking at least 64 oz of water daily for the last week to begin this new habit early, not a big water drinker. After reading all the comments to your post I am feeling a little less anxious and a little more hopeful about Venetoclax ☺️
Wishing you a smooth experience. Drink plenty of water and eat before taking the pills. That was the advice that I received and followed. I wait 30 minutes after eating before I take the Venetoclax and this routine has worked nicely for me. I wish you the best.
I complete my venetoclax fixed duration regime this December. Very happy to report that its been a smooth, and happily, uneventful year long ride. So far, CT scans and lab work look promising for a durable CLL kick in the butt. We shall see ....... now , if we only had a decent knockout punch for the covida loca.
Gazyva first .... then Venetoclax started partway thru the gazyva. I completed the gazyva w/V portion, and the only medication remaining was V. I think this is one of the "standard" O+V fixed duration treatments that some of the folks here are on.
Yes lots of trials for that Venetoclax and Obinituzimab/ Gazyva combinations and it’s hasn’t officially been approved yet in a lot of countries unfortunately
I agree; it's sad that O+V still awaits approval in some countries. If memory serves, the FDA (USA) granted O+V approval, summer 2019. I was lucky enough to be accepted into a trial. And from the looks of things, there's plenty of recent good news concerning other combinations that include Venetoclax.
Thank you Ron, for your update. I am one of those people who isn't in treatment and scared to get to that point. Your progress is very reassuring. Wishing you all the best. Debbie
I too was frightened to begin and actually put it off until after I had issues (shingles, 3 months later horrible skin issues which lasted for 6 months, and finally an enlarged spleen) before I decided to begin treatment, now I wish that I had begun this treatment earlier. The adverse effects have been so minor, to date, that I probably suffered some issues related to a suppressed immune system caused by the CLL that likely could have been avoided by beginning this treatment earlier.
Best of luck with your decision and your treatment.
Thank you for the info. I have been on a clinical trail of Gazyva + Inbrutininb for almost two months and in a week will add Venetoclax to the other two. I will be especially mindful of your recommendation about the water and having it after a meal. Best of luck!
kgerlach57 Diagnosed with CLL in 2012, no issues until this year.
2 days ago
I made it thru 2 treatments of Rituxin. Apparently, that is all I will need and then doc is switching me to oral Venetoclex. I was recently hospitalized again in October, this time for ventricular tachycardia, my internal AICD went off 39 times between ambulance, helicopter and ER. BUT...I wouldn't be here writing you without that device. It was beyond scary. But my faith is even greater now and I know I'm here for a purpose. I was there 8 days, being treated for carotid sarcoidosis; this is what causes my heart failure and arrhythmias. But, between Oncology and Heart Failure specialists they have a good handle on it this time, I'm on steroids to reduce inflammation in my heart, amiodarone for rhythym and a whole slew of other things that, at age 63, I never imagined. But I do have a very positive feeling that this inflammation in my heart will get better with treatment. I'm anxious for my next cardiac echo which should show improvement.
Ronsolo, I read with interest your post on Venetoclax and am glad I did. Will take your tips and follow them.
God Bless you, I wish you nothing but good things and good health!!
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