Side effects of Venetoclax: Thank you for your... - CLL Support

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Side effects of Venetoclax

doris33
doris33

Thank you for your response. What kind of side effects have been experienced on Venetoclax?

50 Replies
oldestnewest

No real side effects to say. Be sure to drink plenty of water during ramp up. Take pills with plenty of food. I take with breakfast.

Maybe slight nausea in beginning but I think I wasn’t eating enough breakfast.

Doing quite well

Hope you do well.

-Sally.

Canuck901
Canuck901
in reply to Iris123

Hi sally are you taking Venetoclax as a monotherapy? How long have you been on the Full dose ?

Iris123
Iris123
in reply to Canuck901

Hello,

No, I am taking the Venetroclax in combination with Gazyva infusions. I started my first of 9 Gazyva Infusions in March. I started ramp up of Venetroclax in April. I have been on the full dose May and June. In February before treatment, my WBC was 250,000. It is now 3.8 which is on the low side but my oncologist says that’s where he wants it to be right now.

Best of luck and sending good mojo.

-Sally

Canuck901
Canuck901
in reply to Iris123

Excellent news for you .

All the best , that’s a great combo

No real side effects during the ramp-up. Maybe one day of diarrhea during the whole ramp up. Once I was fully ramped up, I had a short period (few weeks) where I had slight nausea. I was also having other GI problems after ramp up. Enormous problem with post-meal bloat involving 2 hours of misery after every meal. I don't know if this was connected to venetoclax or was unrelated. I have adjusted diet somewhat and the problem is not really any issue now. I have been on venetoclax 5 months now (including ramp up). And at present I am not aware of any daily side effects from it.

Good luck!

kim

Good to know it's going well for u kim.

Thank you Lydia. Yes, I feel really lucky to be on this drug. I hope you're doing well! :)

Im gonna see Lamanna on thre 7th and I feel good hearing stories like yours. Thank you Kim.

Great that Lamana is your specialist! Is venetoclax being considered fro you? Or ibrutinib?

To tell u the truth Kim I much rather go for venetoclax for some reason ibrutinib scares me.... maybe ignorant, but I don't know it's how I feel.

I can understand that Lydia. And from my own experience with the afib issue on ibrutinib, I would have been better off going straight to venetoclax if that had been an option for first treatment when I started in 2017. But it wasn't.

Thanks Kim , are you currently on the full 400mg dose ? What did you do to solve the GI bloat issues ?

Glad you’re doing very well .

Would you say less side effects with Venetoclax than ibruntnib?

I'm on 300 mg. I got up to 400. But neutrophils started dropping. I panicked and went down to 300 on my own. There was a lot going on and I was worried about being cut off altogether, as had recently been threatened. So I didn't want to find myself with no treatment AND in severe neutropenia AND at the start of a global pandemic. So I dose reduced myself to 300. I subsequently asked if I should go back up to 400. The answer at the time was no. But that might have been because neutrophils weren't totally stable. I'll ask again next month.

The GI bloat thing has basically just been solved with careful attention to diet and meal size. For a while I used Beano after dinner, and that seemed to help. It was a crazy problem I have never had before. But I seem to be more or less back to normal now.

I was never really aware of side effects on ibrutinib, except for afib/atrial flutter. But in general, I am feeling better on the venetoclax than I have in a long time. So I think this is really the right drug for me.

Excellent news , happy for you.

My dad may switch to Venetoclax. The acalabrutnib has done very well for him but he had some skin issues and instead of reducing the dose of acalabrutnib Dr wants to transition him to Venetoclax.

Will know more next week

Iris123
Iris123
in reply to Canuck901

Keep me posted.

Canuck901
Canuck901
in reply to Iris123

In Canada you can’t get Venetoclax as front line therapy only in a trial.

You basically have to have 1 prior treatment if there is an issue or intolerance, then you can be approved for Venetoclax.

Kind of strange but that’s the policy . Venetoclax is apparently the miracle drug for CLL , i hope he can be approved for it quickly.

Iris123
Iris123
in reply to Canuck901

I feel it’s miracle drug. My labs are normal. I feel good. Yes hoping for approval. The hoops we jump thru for our health. Ugh.

Canuck901
Canuck901
in reply to Iris123

Great to hear, I’m happy for him to get approval, sooner than later. His wbc and alc are in the normal range hoping the Venetoclax gives the CLL a knockout punch and a durable remission.

Iris123
Iris123
in reply to Canuck901

I was lucky to get for first treatment. I’m too hoping to continue with a fairly easy treatment and remission in the spring. Hope ❤️❤️

Canuck901
Canuck901
in reply to Iris123

California has some great CLL clinics we are a bit behind in Canada but at least Venetoclax is available.

Iris123
Iris123
in reply to Canuck901

I’m at UCSD with Dr Michael Choi and Dr Thomas Kipps. I’m very very fortunate. And it’s 10 minutes from my house

That's interesting. That could be a good move for him. How long has he been on acala? Long enough to reduce tumor burden so venetoclax ramp-up won't be risky?

Yeah his Dr said his risk for Tumor lysis is very low as his tumour burden is low as the Ibruntnib and Venetoclax cleaned that up nicely. I think 7-8 months.

but he still will have to go through

the 3 times a week for 5 week ramp up bood test to be safe.

Newdawn
NewdawnAdministrator
in reply to Canuck901

My tumour lysis risk was extremely low when I started the Venetoclax ramp up but I still had 3 overnight hospital stays due to high phosphate levels. Best to be aware it’s not just the starting ALC that can create issues.

The hydration level needed can’t be spelled out strongly enough.

Other than that I’ve found it to be a very easy drug to tolerate.

Newdawn

Canuck901
Canuck901
in reply to Newdawn

How much water do you need to consume to stay hydrated?

Newdawn
NewdawnAdministrator
in reply to Canuck901

Taken from the Venetoclax guidance;

‘1.5-2 L of water (6-8 glasses) should be consumed every day starting 2 days before the first dose and throughout the ramp-up phase, especially the first day of each dose increase. Administer intravenous hydration for any patient who cannot tolerate oral hydration.’

Newdawn

Canuck901
Canuck901
in reply to Newdawn

6-8 glasses isn’t that much . Do you take it before or after taking the medication?

BeckyLUSA
BeckyLUSA
in reply to Canuck901

I personally think more like 8-10 glasses is a little better. The more water we drink, the easier our kidneys have it and can get the toxins flushed away more quickly. Also, if your are taking any other drugs, the 8 glasses may not be enough. When I was taking full dose ibrutinib and full dose Venetoclax, my gastroenterologist had me taking 3 glasses a day, just for those meds. It really helps with side effects. I shoot for 8-10 glasses a day.

Iris123
Iris123
in reply to Newdawn

Lots and lots of water. I had no problems.

Canuck901
Canuck901
in reply to Iris123

6-8 glasses ? He drinks that daily now

Iris123
Iris123
in reply to Canuck901

Yes. He will be fine. Drink all day. It was easy for me because I drank that much anyway.

Good point Newdawn. It isn't just ALC that determines risk during ramp-up.

Canuck901
Canuck901
in reply to Newdawn

Cool. thanks for the response.

Sushibruno
Sushibruno
in reply to Newdawn

Newdawn how are you doing after being off ibrutinib?

Nausea and diarrhea but then my body got used to it after a couple years

I was not refering to side effects I was asking that after 2 years on V which will be april 2021 for me do I come off 400mg cold turkey or does one wean off slowly by slowly reducing dose to zero but it is ok because I think it is a question that my specialist can answer

On Venetoclax monotherapy past 18 mths reached MRD-U at 12 mth BMB test.

Side effects

1. Neutrophils pulled down such that I need 3 booster needles a week but this same as when I was on Ibrutinib so susceptible to it happening.

2. Same with platelets sitting at 50-70 most tests

3 initially was taking tablets at breakfast but always had nausea. this went away when I changed to after dinner

At 12 mths I reduced to 3 tablets to try to improve neutrophils but no real change

I hear one needs to think about stopping at 24 mths as read somewhere about 30% have failure of drug at 30 mths. Unsure about this but the fact that our Pharmacy scheme in Australia only supports the drug for 24mths lends some weight to my worry.

I will have to talk to the Doc re this worry All in all a great drug

No side effects ever. I have been on Venetoclax monotherapy for 2 and 1/2 years. I am 81 and feel well. Good luck to you.

Haileybury

I don’t have side effects but do have tummy trouble if I don’t drink enough water. It is good to take the pills with food as well.

I am doing very well on them and am eternally thankful for that. My year on this treatment is up in a September, I am in the end of the tunnel shouting almost out.

Love and prayers for you!

Maggie

Hi Doris,

I’ve been on Venetoclax mono therapy for 26 months as part of the Venice II trial, though I’ve only been taking 200 mg daily dose since November 2018. I’m to continue on this dose until April 2022. Side effects at the beginning were severe neutropenia which led to the dosage reductions — first to 300 mg, then to 200 — and diarrhoea. I still get a modest about of diarrhoea about once a month and, strangely, the smell of cooked eggs makes me nauseous so I’ve stopped eating them.

Hi Doris,

Venetoclax and neutropenia have been dancing with one another inside me for approximately a year. Many injections of Neulasta (not fun) and Granix (no side effects, but could require daily injection, possibly self-injection). I even had to come off Venetoclax twice for short times when both sick and neutropenic. But, overall, it seems to have been an extremely beneficial drug for me. My [final?] staging is this Thursday. I’m hoping the entire treatment is done. What a miracle this combo (Acalabrutinib, Obinutuzumab, and Venetoclax with Venetoclax as the “knockout punch”) seems to have been. I’m ready to be done with my pile of pills, though.

Best of everything. You’ll do well. “The big V will hook you up!”

Glenn

Good luck on a Thursday, Glenn! I’m three weeks behind you. Anxious about my results because I had to reduce Venetoclax to 200 mg in February because of neutropenia, but I am hopeful.

Greatly depressed WBC count and other immune system elements. Have received many “ Nuelasta” shots over the last three month to boost WBC count.. only makes a difference for a week or two. My doc is acting as if he’s concerned but has not said it out loud yet. Almost scared to change meds that would have potential different side effects.

doris33,

All symptoms were mild and tolerable, included but not limited to - Dry unproductive cough, sinus aggravation, muscle cramps in legs, creatine level subject to fluctuation with inappropriate hydration, borderline neutropenia, diarrhea and bloating, nausea, itching.

The nausea was better when I took venetoclax after the evening meal just before bedtime.

I experienced some vision challenges during this time as well, however, I am not as persuaded to say that it was related.

JM

I completed my year of V. Like others no side affects that I noticed, unlike Ibrutinib. I did have some mild side affects from the Gazyva. An evening with the shakes and temporary forgetfulness.

doris33
doris33
in reply to IRN83

Hope I respond as well to Venetoclax. Thanks for the information.

I have been on Venetoclax since January 2019...had 6 Rituxin infusions (February - July 2019), but now I am only on Venetoclax (400 mg/day). I had tummy distress the first couple of months, but that went away. One side effect that I have dealt with off and on is joint stiffness...my hands and hips seem to be the worst. I didn't have this prior to starting V, so I feel sure it is related. Also, my white cell count and neutrophils have been consistently low; however, I haven't had to change the dosage because they were too low. Other than that, it has been much kinder to my body than the Ibrutinib.

doris33
doris33
in reply to Lisa-1959

Sounds very good. Not sure when I will be transiting to Venetoclax. Still getting Obinituzimab which has markedly decreased my WBC after 3 infusions. In the normal range but platelets still quite low.

I had a slight bit of nausea the first few days, but nothing else.

So lucky, Hope you are continuing to do well. My WBC has gone from 116 to 9 after two weeks of Obinituzimab treatment. Dr. thinks I maybe able to wait on taking Venetoclax.

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