VenClexta side affects… Has anyone figured out how to stop the nausea and vomiting ?

[999990Bruno]

Hi I’m a 24 year CLL patient. I have had my share of chemo treatments and battles with mucor mycosis lung infections, sinus infections the entire gamut. I recently started VenClexta about 4 months ago. Once ai reached the full dosage, I have to say for me it may be worse than my most intense chemotherapy treatments regarding the nausea and vomiting. I’m wondering if anyone else has this issue and if they have found a strategy to beat it. I feel I have tried adjusting my eating times, drinking 64 oz water, taking nausea medication. Which does not work for me. I recently used the sublingual Zofran. It seemed to help the first few times but then stopped working. Thought I would reach out for support!

[AussieNeil Administrator]

Thankfully, I mostly escaped that side effect on treatment, but at times found the sublingual tablets very helpful. That you have tried this makes me wonder if you are not being proactive in taking meds long enough before you tend to experience the nausea/vomiting? I know well the wish not to take even more tablets, but it's very important to suppress the nausea before it develops, when you then can't take an anti-nausea med - and keep it down.

Also, some of us have found switching to taking venetoclax at night, when your body is winding down preparatory to sleeping, suits us better. If you haven't tried this, you need to slip to the new time of day you take your tablets gradually to maintain control over your CLL. Per

venclexta.com/previously-un... you can take your dose up to 8 hours after your usual time, so you can probably slip to your new time in three steps.

Neil

[999990Bruno in reply to AussieNeil]

Thank you that’s great advise! You know you’re right I’m not proactive enough. I will get I. Front of taking the sublingual and definitely switch to taking at night. It make sense as well because I take slue of other pills in the am for diabetes , heart disease, etc. all these things just start to pile up after years of treatment and sometimes when youre inThe storm you can’t see…

Thanks again for shooting straight

Respected!!!

[AnneHill in reply to 999990Bruno]

I remember when I had fcr I had to ask for a change of med as I felt so ill. I was given the same advice. Take the med before you need it.When I need a different treatment the plan is for me to get Venetaclax. I didnt realise it could make you so bad.

I take a cupboard full of meds and I understand how you feel. I hope you feel better, Anne uk.

[999990Bruno in reply to AnneHill]

Thank you Anne for the great advice and encouragement.

[SofiaDeo in reply to 999990Bruno]

Oh yes, I have noticed when I take almost any other med along with the Venclexta it upsets my GI tract.

[999990Bruno in reply to AussieNeil]

Thanks for the advice I have started switching to night. As well I do eat the fatty food with the meal. Your suggestions are very valid. I am taking the Zofran before meals and the Ativan at night. I had been taking my VenClexta around 1 to 2pm each day. This wasn’t working particularly because in the morning I take about 10 pills from Ibrutinib, Tradjenta, protonix, olmesartan/amlodepine, hcthiazid, about 4 vitamins.

So my new strategy is (and I tried last night)to take The Zofran around 5:30 Pm ate around 6:00 and took the VenClexta around 6:15.

Went to bed at about 9:15. When I went to bed I took the Adivant and I slept well with no nausea. I woke up around 5:00am feeling great. After my coffee and about 1hour awake in the am. I started feeling slight nausea so I started drinking my water for the day and I took another Zofran and ate some lite breakfast about 30 minutes later. So far so good.

My plan is to move the regimen about an hour forward tonight and another hour forward the following night. That way I can get into going to bed by 10:30pm

Thank you for your thoughts.

[AussieNeil Administrator in reply to 999990Bruno]

Good to hear of that promising progress. Thanks for your pleasing feedback!

Neil

[SofiaDeo]

Maybe changing the time between eating and taking the med, and/or changing the type of food eaten, will help. I had nausea and mild diarrhea during ramp up. After experimenting when on the full 400mg dose, I find I need to take the tablets about 15 minutes-1/2 hour after I have *finished* eating my last meal of the day. With a solid 8-12 oz of water. And if I don't have some decent fat in that meal, I get an acid stomach. And my body doesn't like me to do anything more strenuous than walking or easy stuff like putting laundry away/tidying the kitchen after the med, too. During ramp up when I had to take the med early, I was often ill most of the day.

Also, plain Zofran isn't a sublingual tablet. The plain Zofran is swallowed with water like other tablets. Zofran ODT, which is an Oral Dissolving Tablet, is designed to be placed on top of the tongue. Since you said "Zofran" and not "Zofran ODT" I am wondering which drug you have been given. Please verify which one you received; I have gotten plain Zofran before in error when I was wanting the ODT. So if your doc said "put it on your tongue" but somehow you got plain Zofran instead of Zofran ODT, it wouldn't work well.

And I am not sure if using the ODT form will be absorbed the same when just placing it under the tongue like a sublingual tablet. It's not designed to be sublingual. ODT dosage forms of drugs are formulated to dissolve when placed on *top* of our tongue. There may actually be little difference, but no one has studied it to my knowledge. And since some sublingual medications may take 15 minutes or so to be absorbed, perhaps on top of the tongue is clinically significant compared to placing it under the tongue. The tissues are slightly different.

verywellhealth.com/zofran-o...

[999990Bruno in reply to SofiaDeo]

Thanks for the advice I have started switching to night. As well I do eat the fatty food with the meal. Your suggestions are very valid. I am taking the Zofran and the Ativan at night. I had been taking my VenClexta around 1 to 2pm each day. This wasn’t working particularly because I the morning I take about 10 pills from Ibrutinib, Tradjenta, protonix, olmesartan/amlodepine, hcthiazid, about 4 vitamins.

So my new strategy is (and I tried last night)to take The Zofran around 5:30 Pm ate around 6:00 and took the VenClexta around 6:15.

Went to bed at about 9:15. When I went to bed I took the Adivant and I slept well with no nausea. I woke up around 5:00am feeling great. After my coffee and about 1hour awake in the am. I started feeling slight nausea so I started drinking my water for the day and I took another Zofran and ate some lite breakfast about 30 minutes later. So far so good.

My plan is to move the regimen about an hour forward tonight and another hour forward the following night. That way I can get into going to bed by 10:30pm

Thank you for your thoughts.

[Annie1920]

I found eating a high fat food before taking mine stopped nausea.. Toast with lashings of butter plus full fat yoghurt or avocado worked for me

[Mick491]

Hi

I was on Venentoclax for a year until the vomiting became unbearable and I lost a stone and a half in weight. With the agreement of my consultant I stopped after trying various levels of dosage. I have stopped being sick and in the main stopped being nauseous. I still have bloating and firmness of the tummy but my appetite is back. I've just had a CT scan to see where my spleen is at and if the lymph nodes are reduced. Get the results in two weeks or so. But my consultant has said there are other treatments to go for. This is third line treatment for me having had firstly FCR then ibrutinib. I do feel for you as I'm 63 and you being so young having what is generally an older person's disease. I wish you well. One other thing I tried various anti sickness drugs but they left me with severe constipation. I had some mild success with travel sickness wristbands. I also gave gaviscon and milk of magnesia. Can't say I didn't try before succumbing to stopping. We are all different and respond differently to treatments. Good luck. Mick

[Lilsa]

Definitely worth switching to evening dosing. That change totally eliminated the nausea in my case. Also, for me it is important not to exercise after taking the medication, and keeping the number of different medications to a minimum in the evening. Good luck! I have only 6 weeks to go! ( by the way, I just found out it’s not 12 cycles but 12.5 cycles - to finish off the last full bottle of Venetoclax)

Keep walking

Lilsa

[999990Bruno in reply to Lilsa]

Hi Lisa great advise. So you are saying you did a one year program? May I ask if you are a CLL patient and where are you with your treatment?

[Lilsa in reply to 999990Bruno]

Yes I have CLL, diagnosed in 2013 and started the “12 cycles”of Venetoclax / obinutuzumab treatment last October. I live in Canberra, Australia. I see a local haematologist and also have a CLL specialist in Melbourne. My treatment is here in Canberra.

I am really looking forward to finishing the 400mg daily dose of Venetoclax and have become rather fixated on the finish date!

Keep walking

Lilsa

[Edhair97]

You may want to try ginger candies. I have Gin Gin chews and Tummy Drops. They really do help.Ordered both from Amazon. I drink ginger ale too.

I am on 400mg Venetoclax daily.

I take it in the late afternoon/early evening with food( with fat added- butter, peanut butter, cream cheese or something like that).

I have Compazine and Zofran ODT for bad days.

I hope you feel better soon .

Sallie

[bayside64]

I switched my Venetoclast from morning to afternoon and still had bathroom issues. Dr. said to try it later. So, for me, taking it between 6:00 and 7:00 pm has made a big difference. I take different pills before bedtime.