Obinutuzimab - anyone get nauseous?

[SunnyCA]

So I’m hoping to begin my obin infusions this week - just curious why they prescribed two different nausea pills Zophan and Compazine along with the allopurinol. I thought Obin is well tolerated - has anyone been nauseous and vomiting with this infusion? I start the Venetoclax ramp up on week 3.

[Pacificview]

To answer your question. For some people it is very well tolerated.....BUT.Its a roll if the dice whether you will fall into that group. So you want to have a bag of remedies just in case.

I found that I felt better if I drank at least the recommended amount of water. I have taken the nausea medicine quite frequently for 9 of the 12 months. I suspect I will continue as well till Ven is totally out of my system. I have never vomited, but plenty zofran and over the counter chewable Nauzene tablets have been invaluable. I took hickup medicine Baclofan to infusions and still have it on hand. Another drug I found very important to have on hand is Benedryl. I fought allergic reactions pretty much daily for months. The allergic reactions appear to finally be subsiding.

So being preparred for what ifs is the way to go. Lord willing you will be in the no side effect camp.

All the best.

[SunnyCA in reply to Pacificview]

Thank you most helpful - I’ll be prepared tho I find zophran kind of nauseating. May have them switch that one up.

[SunnyCA in reply to Pacificview]

What allergic reactions did you have and was it after you left Obin infusion or when taking Venetoclax?

[Pacificview in reply to SunnyCA]

Facial flushing and Itching. The itching would quickly spread at various places around my body. Usually I would notice it and realize it was an allergic reaction. Most often by the time it hit around 3 body parts. Maybe face, stuffy nose, eyebrow, forearm itch it would systematically spread fairly quickly over a matter of minutes. If my alarm bells didn't go off by then. It would continue spreading and then maybe 5 or 6 areas would be itching. I would take the Benedryl a.s.a.p. following dosing instructions. Taking as much as needed to beat back the reaction. More than a few nights I woukd take the benedryl on a schedule to beat it back. Most of the time, 25 to 50mg would stop it. For a few months I quit taking Ven at dinner. As I did not want to be up all night fighting an allergic reaction. Or fall asleep and wake up with hive blisters or worse. So I switched to breafast time so that by the time I went to bed. There were no allergic reactions to be had. Any allergic reactions with Ven were typically within a few hours after taking it.I am at the bottom of the 10th cycle. All itching allergic reactions have diminished. Are easily handled with a 50mg dose of benedryl. I had so many I used up a bottle of 25 mg. I Decided to just buy the 50mg since quite often I needed that much anyway to stop a reaction. Currently I only take one every day or two now.

Ven under 200mg was a nothing burger. But 400mg was unpleasent. Body aches and pains, the allergic reactions mentioned above, nausea without vomit.

Obin was not easy for me, quite misserable for a week after infusions. Some weeks feeling like how in the world am I going to be able to take ghe next infusion. A feeling like had the body flu. Drinking lots of water was the only thing that would make me feel better. I always felt fine while getting the infusions. It was always by the night of, when I started feeling bad.

During Ven, I have really cut back on water intake after ramp up. As it did not seem to make me feel any better.

My blood numbers have been in normal range for months. I needed no supplemental care. Never was hospitalized, just got the infusions and went home. Ramped up Ven at home and have been on 400mg ever since. Thought about reducing Ven many times, but have just gutted it out.

I figure I have endured about 18 of the noted side effects during my treatment on O and V.

Those side effects are known and listed on Genentecs website for O and V treatment.

Now, you may have no side effects at all. Its a roll of the dice. I thought it would be a cake walk. But, it turned out to be not much fun at all for me. But everyones body handles it differently.

The reason I have kept the schedule of treatment intact inspite of side effects. Is that I keep my eyes on the possibility of years of remission off treatment. If I had altered time or amount of Ven taken. I did not want to risk a lower degree of benefit.

Now, the next treatment I will probobly just take a daily BTK. If that particular BTK makes me sick. I would not gut it out, but try another treatment if one is available.

It was a rough year with a lot of time spent horizontal on the couch. I prefer not to go through that again if I can avoid it.

This is more info than you asked for. But its good to be preparred.

Lord willing, you will sail through like so many that had no side effects at all.

[SunnyCA in reply to Pacificview]

Well done on your mental toughness. I guess my worse fear is constant nausea - even with chemo it was a finite time of that - 3 days and I would pop back up - of course it is now many years later and I’m older. Just been so spoiled on ibrutinib - the worse I had was joint pain and skin stuff. I’m super active so the thought of taking to my couch for days on end is giving me anxiety. Also, Benadryl puts me to sleep in 15 minutes - so not ideal to live on that either. Ugh - okay if you can do it so can I - will keep my eye on end game . Thanks so much for the detail - I like to be prepared.

[neurodervish]

I didn't have any nausea from the Obin ramp up period. But when they later added the Bendamustine (chemo) I had plenty!

Since the Obin infusions will be once a month (after you get up to the full dose), I wonder if you could try skipping the antiemetics (anti-nausea meds)? That way you could find out which camp you're in. Tho it's important to know that antiemetics work best when taken before the nausea begins. Once the vomiting starts, it's tough to stop it.

If you do go with the antiemetics, be sure to take stool softeners in advance, as these drugs can be very constipating. (CostCo had them for under $10 for a large bottle, but my hospital pharmacy wanted $29 for a tiny bottle.)

[SunnyCA in reply to neurodervish]

Thank you so much. Guess I’m going to find out. I have a low bone marrow load at the moment 5% so am hoping that is on my favor.

[DanBro1]

I had mild chills my first month 100MG and 1000MG infusions... no problems after that.

[SunnyCA in reply to DanBro1]

Thank you! I like the no problems part.

[Paulhonda]

I found Obinutuzumab a very easy treatment apart from the boredom😀. No nausea and was not given any nausea tablets.

[SunnyCA in reply to Paulhonda]

Thank you - hoping this is my experience.

[Lilsa]

Hi SunnyCA,

Obinutuzumab and venetoclax were very easy for me, except for the one occasion I did a 12km hike on a hot day and didn’t drink enough water……… vomit vomit vomit! Make sure you keep up the required water intake and chances are there will be no problems.

Keep walking

Lilsa ( from sunny Canberra, Australia)

[SunnyCA in reply to Lilsa]

Gosh hoping I can stay active too! Duly noted on the water intake.

[MickUK]

I had a reaction to my first infusion of Obinutuzumab, but the nursing staff were on hand very quickly and sorted me out. I had no problems or side effects with the remaining infusions.

My Venetoclax ramp up also went well with no side effects, although I did have to have a 3 day treatment with Filgrastim to increase my neutrophil levels and Romiplostim injections weekly, which I adminstered myself, to maintain a decent level of platelets from about my second month of Venetoclax.

Fingers crossed that you have a similar fairly easy journey.

[SunnyCA in reply to MickUK]

Thank you. So glad to hear yours was relatively straight forward. Hoping for the same.

[Big_Dee]

Hello SunnyCA

Nausea was not a problem for me with Obin, however nausea, vomiting and diarrhea came with Venetoclax. I took ondansetron/zofran for nausea. Blessings.

[SunnyCA in reply to Big_Dee]

Thank you. Assuming the Venetoclax settled down for you eventually right?

[Big_Dee in reply to SunnyCA]

Hello SunnyCA

Dropped off a lot after I finished Venetoclax.

[SunnyCA in reply to Big_Dee]

How long were you on Venetoclax?

[Big_Dee in reply to SunnyCA]

Hello SunnyCA

One year.

[Dexterdoggg]

I was nauseated about 20-30 minutes into my first infusion. I also felt hot starting at my ears then going to the top of my head. I also started sweating a little. They stopped my infusion, gave me a brief hydration IV and started the Obinutuzimab again. After that, before each infusion, they gave me a Pepcid infusion and I had no issues after that first reaction.

[SunnyCA in reply to Dexterdoggg]

And what about the Venetoclax?

[Dexterdoggg in reply to SunnyCA]

I didn't have any issues with the Venetoclax.

[GoingDownFighting]

I too had a reaction to my first infusion of Obinutuzumab (got dizzy and very hot, felt like I was going to pass out), but the staff was quick to address it. They stopped the infusion, gave me OJ and some crackers and restarted after about a half an hour. After that I did not have any problems with the IV except for the one time they had to try 5 times to find a vein for the IV (I do not have a port) and I got nauseous from that but I think it was because I mentally psyched myself into panic.

I did not have any nausea / reaction when I started Venetoclax. They did reduce the V to 100mg / day but only because it was working too well in reducing my numbers. I too was prescribed Prochlorperazine (Compazine) but I have only had to take it a couple of times, not from the Venetolclax but most likely food I ate.

However, the bone aches i get when they have me stop V to give me ZARXIO to increase my numbers (when I am dangerously low) I have to admit is pretty bad. But Claritin and / or Benadryl help with that. Other than that I have done pretty well.

I wish you the best on your remission journey! GDF

[SunnyCA in reply to GoingDownFighting]

Thank you for these details - so helpful to be prepared. I start Monday.