no more obinutuzimab

[Alex830]

Just got a call that they are discontinuing my obinutuzimab infusions. Not totally unexpected. I had 4 infusions this month and had reactions every time. They were afraid I would end up in the ER again. I will continue with the Venetoclax and hopefully will be able to get to uMRD. My doctor said I am his first patient who had to stop obinutuzimab, the one time you don’t want to be special.

[Indolent]

Alex,

I too am a member of the "only 4 obinutuzumab infusions" club. Every time I received it, my numbers would bottom out. Finally my doctor waved the white flag and said no more.

However, I do think the drug is very effective. It delivered results very quickly. My takeaway was that were all different and our "mileage will vary" with these drugs. Good luck with venetoclax. It also took only a reduced dose for me to get a good result.

[Schubert1870]

I’m sorry to read about the reactions you had for each infusion. If it helps to know I was on mono therapy Venetoclax for 2 years and now in remission. I think you will do fine.

Take care,

Schubert

[Dawson21]

I had a single major reaction and was switched to Rituximab and Venetoclax for 24 cycles. Worked fine. 4xinfusions in a month sounds a lot - I was scheduled for 6 over 6 months.

[Alex830 in reply to Dawson21]

First month is 100 ml on the first day, 900 ml on 2nd day, 900 ml on day 8, 900 ml on day 15. Each infusion they infuse on higher speed. This is standard procedure. I actually switched from Rituximab to obinutuzimab because I ended up in the ER after the third cycle of Rituximab, had a reaction to that also each time.

[Skyshark in reply to Alex830]

100mg in 100ml for 1st day. 900mg in 250ml for 2nd day. 1000mg in 250ml for all subsequent days.

The 1st day is a flat rate of 25 mg/hour over 4 hours. I had a reaction in first few minutes, they cut the rate by half and it took 8 hours. Ran a temperature 38C/100F throughout so they couldn't increase the rate.

Day 2 the rate starts at 50 mg/hr and increases by 50 mg/hr every 30 min until it's at 400 mg/hr, takes about 4 hours. For day 2 after severe reaction on day 1 there's a slower rate that starts at 25 mg/hr, takes about half hour longer.

Day 8 onwards the rate starts at 100 mg/hr and increases by 100 mg/hr every 30 min until it's at 400 mg/hr, takes just over 3 hours. For severe reactions on previous dose there's a slower rate that starts at 50 mg/hr and increases in 50mg/hr steps every half hour, takes about 4 hours.

You might not notice the slower initial rate on day 2 but day 8 onwards it's quite easy to tell if you have the slower rate as after the start there are 7 changes to the rate settings as it ramps up instead of 3 changes on the normal rate. There's no rest for the nurses on a slow IV.

Were you having a reactions from near the start, like 1st half hour or was it later in the IV?

And then there's this. Doctor was proper determined to get the Obin into him. Rate changes every 15 minutes.

healthunlocked.com/cllsuppo...

I've seen other slow start IV rates for 1st dose of Obin, like this one. They start 1st day at a quarter of normal rate for first hour, double it in 2nd hour and then double again for remainder of the bag. Just noticed from cycle 2 onwards they may use a 93 minute SDI rapid rate for patients that can take it without problems, 10% in first half hour, 90% in 63 minutes. I've had three 20%/80% SDI.

cancercare.mb.ca/export/sit...

[Alex830 in reply to Skyshark]

At about 150 ml every time, same with Rituximab and again at around 200. Plus it became harder to control the reactions. I basically maxed out on steroids and Demerol each infusion. I also got Benadryl and Dexamethasone and Atarex before starting infusion.

[CycleWonder]

I’m glad you have a path forward.