Obinutuzumab Question: Hello: As I posted... - CLL Support

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Obinutuzumab Question

HopeME profile image
16 Replies

Hello:

As I posted recently that I’m going through O + V treatment presently. During December I will complete three weeks of Obin infusions. The first week was broken into two days, this week was one day and next week is one day. My question is how many more months of O infusions will I get after December? Does December count as 1 cycle, 2 cycles or 3 cycles? Any educated guesses? I keep meaning to ask my medical team and will do so next week. It would be great if this month counts as 3 cycles toward 6 but I don’t think that is the case. I think this week’s infusion was 800ML but I’m not positive on that point.

Thank you,

Mark

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HopeME
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16 Replies
Poodle2 profile image
Poodle2

Hey Mark, this is it. Sadly no, you would have finished cycle 1 by then. It will go quicker than you think, trust me. Petra

Obinutuzumab cycles
HopeME profile image
HopeME in reply to Poodle2

Thanks Petra. Not what I wanted to hear but at least now I know when I’ll be done😁.

Mark

AussieNeil profile image
AussieNeilAdministrator

You're in the middle of your first 28 day cycle, in which you have your first 4 infusions on day 1, 2, 8 and 15. You've had the test 100mg infusion followed by the remainder (900mg) and your first full infusion of 1,000mg. You'll have another two infusions (day 8 and 15), then infusions every 28 days. Here's the official protocol: gazyva.com/first-line-cll/d...

This is the protocol I followed on my AVO clinical trial, which I think is the same as that done at Dana Farber. You have a total of 9 infusions, in which you are given a total of 8,000 milligrams (8 grams) of obinutuzumab.

There's a nifty explanation of how obinutuzumab is thought to work (I'm quoting from the Gazya site), here: gazyva.com/first-line-cll/a...

Update: I see Poodle2 has provided a table view showing the same protocol.

Neil

HopeME profile image
HopeME in reply to AussieNeil

Hi Neil:

Thanks for even more information,. I guess I’ll be wrapping up the hard part of this treatment in May. I’ve just marked the last day on my calendar 😁.

Best,

Mark

Downriver555 profile image
Downriver555

Hi Mark, just some words of encouragement. Treatment goes faster than you think. I was one of the first to get the FDA approved combo of venetoclax and obinituzimab back in 2018. I had a blood test at the end of my treatment and it was mrd negative. Meaning no cancer cells were detected. I am currently 2 1/2 years out and my lab work from 2 days ago came back all in the normal range. IGg however remains low. All in all it is the best outcome I could have hoped for. I think the combo of treatment you are on is the best.

All the best during your treatments ,

Susan

Have you had any problems with this medication? It’s probably what I’ll be starting after 1st of the year.

HopeME profile image
HopeME in reply to

No issues other than tiredness. The biggest problem is needing to be at the hospital frequently early in the treatment process. You will do just fine.

Best,

Mark

Poodle2 profile image
Poodle2 in reply to HopeME

Mark, once you are ramped up to the full dose of V, you will have so much time on your hands you won't know what to do with it 😉 the tiredness also got better as time went.

HopeME profile image
HopeME in reply to Poodle2

I’ve got my head down and pushing forward. I just need to get about a month out and I’ll be in great shape. Thanks for everything!

Mark

02Raspy profile image
02Raspy in reply to

I started yesterday with 100 mg. It was rough. Very early on I had a reaction. Blood pressure up, heart rate up, oxygen level down. The medical team jumped on it an stabilized things. I finished the dose with a headache and leg cramps that went away in a few hours. 900 mg today went smoothly. I plan to play 18 holes tomorrow. My advice is to drink a stupid amount of water. It will help alleviate things.

Big_Dee profile image
Big_Dee

Hello HopeME

I did 3 cycles of Oblin at one a week, then will do 4 cycles every 28 days to finish. Blessings.

Jujy profile image
Jujy

Cycles are always 28 days, weeks are … well, weeks. If you are in the same protocol as my husband, Cycle 1 Week 4 will be your start of Venetoclax. Basically, your first two cycles are very busy.

Gradyboy profile image
Gradyboy

I am on this same treatment. After the first cycle it gets much easier. I just was ramped up to my full dose of Venclexta yesterday and start cycle 3 of O on 12/26. Every 28 days is a lot easier than those first three weeks. I feel great though and numbers have been perfect. Best of all lymphnodes have completely disappeared. Hang in there it gets much easier.

jacjar1 profile image
jacjar1

its easier than you think. except for lots of appointments for the first few weeks. Bloodwork before each treatment. First treatment took over 6 hours now on 4th down to 4-5 hours each time.

Gradyboy profile image
Gradyboy in reply to jacjar1

Have you started Venclexta yet?

jacjar1 profile image
jacjar1 in reply to Gradyboy

yes I'm on 6th week of venclexta 400mg a day. so far its been okay

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