Starting treatment Wednesday : Hello everyone... - CLL Support

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Starting treatment Wednesday

mfc86 profile image
7 Replies

Hello everyone, has anyone had obinutzumab and venetoclax, if anyone could share there experiences it would be much appreciated.... 👍

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mfc86
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7 Replies
lankisterguy profile image
lankisterguyVolunteer

Hi mfc86,

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We have 5,863 past postings that mention obinutuzumab and venetoclax

healthunlocked.com/cllsuppo...

The first few pages should have plenty of information for you.

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Len

Poodle2 profile image
Poodle2

Cycle 6 of this treatment now. You can read my previous posts although if you do a quick search like Len mentioned, you will find loads of information. It's a great treatment, it was not easy to begin with but so worth it. Wishing you all the best.

Petra ❤️

mfc86 profile image
mfc86 in reply to Poodle2

Thanks Petra, will take a look.. 👍

AussieNeil profile image
AussieNeilAdministrator

There are plenty of past posts mentioning venetoclax and obinutuzumab as Len notes, so there's a wealth of community experience with these very effective medications. Be aware that you have posted unlocked, so you may not get as many replies as you would if you posted it for our community only, but your post might be found by others searching for this information: healthunlocked.com/cllsuppo...

I had venetoclax and obinutuzumab with acalabrutinib beforehand, so this and the obinutuzumab dealt with my tumour burden, so that the venetoclax ramp-up was straightforward. It's important to drink plenty of fluids from before and during the venetoclax ramp-up phase and also before and after the obinutuzumab infusions. Just don't overdo the fluid intake: healthunlocked.com/cllsuppo...

The obinutuzumab infusions take forever, plus you need to wait an hour for the premeds to take effect, so take plenty to stay entertained. You might even sleep during your infusions, thanks to the effect of the premeds. Don't be surprised if you are tired the following days. Also, if you get an infusion reaction, it's likely to come on rapidly and dramatically, nearly always during your first test infusion of 100mg. They rarely occur in the following ones. Call for nursing assistance if you notice anything unusual happening; early interaction reduces the severity. Having someone present with you is a bonus.

Neil

Winegrape profile image
Winegrape

Hi mfc86, I just finished my year of treatment with Venetoclax/ Obinatuzimab on Monday. I didn't have any problems with it except like some others at their first infusion and a slight reaction to it but I was able to finish it and never had a problem again. The pills never bothered me unless I didn't take them with food. I'm glad I chose this treatment.

Gardengirl44 profile image
Gardengirl44

All the best with it!! I am a fan. It's time consuming at first as you ramp up, and the lab part of the treatment is not so fun. I am in a study so they take blood out of my hand as a part of protocol.... You will also get used to taking a Benedryl nap prior to the Obin infusion part ... Both O and V were well tolerated by me and the staff will watch you every step of the way. Best wishes and feel free to reach out with any questions. I finished my O and now exclusively taking the V pills for a bit longer.

mfc86 profile image
mfc86

Thank you.... Took my first v tablet today, its all gone far better than I ever could of imagined, just the odd day with fatigue and that's been my only side effect so far..... Long may that continue 🤞..... And thanks for the message and continued good luck with yours 👍🤞

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