Obinutuzumab and Venetoclax

[426hemi]

Hi everyone,

I start my Obinutuzumab infusion on October 26th. I’ve read most everyone’s experiences on the upcoming treatment. Been quite a help. Put me at ease. my one question with Obinutuzumab is that it’s not weight specific. I’ve always have been in shape with working out and jogging. I was diagnosed in 2014 and I’m watching wait since. At the time of diagnosis I weighed 160. Although my appetite has been the same I now weigh 150. being that I have less body mass than let’s say a 200 pound person would I be more vulnerable to infusion reactions. Has anyone out there gone through these infusions weighing approximately 150

I’m on no meds got the green light from my GP, cardiologist, and saw my dermatologist. Also received flu shot and new Omicron covid booster. Will schedule tooth maintenance and cleaning this week. Did I forget anything. I’m starting to become sleep deprived as anxiety for this infusion creeps in at night and keeps me awake. also I found this guy Todd Dunn on YouTube who actually Films himself as he was getting his Obinutuzumab infusion. His calm demeanor has helped me and it may help other people. I will put the link below. Thanks everyone. Dave

youtu.be/_y8RwTQ1U-o(Not working as expected?)

youtu.be/di49N660i0I(Not working as expected?)

[Jujy]

My (short) husband starts on Obinutuzumab next Monday (October 24th) on what appears to be a standard dose (1,000 mg). He currently weighs in the low 130s (about what he weighed when we met 30+ years ago) down from his high in the upper 140s. I am hoping that everything goes smoothly. Thanks for posting the video.

[426hemi in reply to Jujy]

Thanks Juju

Hope all goes OK for your husband. you can go to Todd Dunn’s YouTube website but you’ll have to scroll down to 2018 and see the rest of his infusions. All go OK with no infusion reactions or side effects. Was helpful to me. Dave.

[Poodle2]

I'm currently on this treatment, you can read my journey if you look up my other posts.

I'm around 130 pounds and I personally don't think that your weight will play much of a role. I think you can expect to possibly loose some weight in the first few weeks, I did and it happened really quickly.

I believe you are more likely to have a reaction if your lymphocyte count is very high and if the Obi works really well in bringing it down quickly - at least that's my understanding - a high count that is reduced dramatically can cause a reaction.

I also had some reactions to the infusion but always felt safe, they are very experienced and keep a really close eye on you. I had a fever at night after the first O infusion. Later it became very clear it was a reaction to the dramatic reduction in my lymphocytes (I went from 150 000 to 8 in two days!).

All the best.

Petra ❤️

[jacjar1]

Same here after my 4th infusion its pretty much in cruise control. had a few minor reactions and one swollen arm from leaking IV. Side effects is just feel like I have a cold a few days after infusion. it eventually goes away. White cells are at normal now. Going to once a month infusions in November.

[Pete9876]

Hello, I had my Obinutuzumab infusions about 2 years ago. I weighed 140 pounds. Didn’t have any issues and the Obin works wonders. Good luck with your treatments.

[426hemi in reply to Pete9876]

Thanks everyone for making me less anxious and hopefully giving me a few more hours sleep tonight. Dave

[Jmiah717 in reply to 426hemi]

I did my first infusion while unknowingly having COVID. I had a very mild reaction that was easily managed and never dangerous. And I'm about as anxious as they come. Follow your pre-med schedule and your reaction, should you have one, will be easy to manage and go away quickly.

For what it's worth, the infusion nurse said everyone has a reaction. But he said they are easy to manage and they do it every day.

My best advice is don't get COVID 😂. Good luck!

[Unglorious]

Thank you so much. This was so helpful for all in the CLL community. Wishing you well.