Starting V & O combination therapy

[RitaBa]

It’s my turn and today (Monday 9/3/21) I start my treatment. I will be kept in overnight.

Fingers crossed and I will update on my progress.

I have been told to expect tremors (scarey !!)

Scareyyyyy ...

[AussieNeil Partner Administrator]

You might have an infusion reaction to the Obinutuzumab, but the infusion nurses know how to handle them. Just let them know immediately you feel slightly different. They are less scarey when you are informed they might happen and it's rare to have them in subsequent infusions. I only had the one during my first infusion.

Neil

[RitaBa in reply to AussieNeil]

Thanks Neil. That’s re-assuring

About to start ...

[LovelyLilyGirl]

I had a slight reaction with my first infusion but it wasn’t as scary as people were telling me. And the nurses were there by my side and got it under control within one minute. I did not have any reactions with subsequent infusions. As I’ve said before on this site, IV Benadryl was my friend.

Best of luck to you

Sally

[RitaBa in reply to LovelyLilyGirl]

Thanks Sally, thats really helpful.

I was beginning to think it’s bound to happen to me as Prof said.

I suppose he was playing safe in telling me.

[RitaBa in reply to LovelyLilyGirl]

... and I am now reading up on your posts & journey to remission.

Long may it remain.

[MGirl-Aust]

I started obinutuzumab 10 days ago. I had a mild-moderate reaction on the first day (flushing, palpitations, slight nausea) but it was managed well and I resumed the infusion without further problems. In week 2 I had a mild reaction (minor flushing, palpitations) and again treatment was stopped for a short time and then resumed without any problems. Overall it was easier than expected.

All the best with your treatment.

Michelle

[RitaBa in reply to MGirl-Aust]

Thanks Michelle and I hope t goes well for you too !

[DRM18]

Good luck, RitaBa!

As I’ve written in my posts (please read them!), I loved getting my O infusions: I knew I was being pumped full of devastatingly powerful health potions. Never had a bad reaction, not once.

May it be the same for you!

—Dave!

[RitaBa in reply to DRM18]

Thanks Dave,

Reading your posts 👍

I didn’t get the tremors

[1ofakind]

Best of Luck as you begin on the road to full recovery!!Feel good!!

[RitaBa in reply to 1ofakind]

Thanks 🙏

[Smac29]

Hi RitaBa,

I had pretty mild reactions to Obinutuzumab. I was more scared waiting for the reactions. The nurses were right there to help out and give more Benadryl or stop if needed. The first 100mg is given very slowly. Try not to worry. I had a hard time concentrating and sleeping with the steroids. After the first infusion all the others went very well. Today was my last infusion with Obinutuzumab!! 🎉🎉

Good luck with your treatment!! We are all in this together!!😃

Sheryl

[RitaBa in reply to Smac29]

Actually I am about to post on my second day and ditto / same as you 🙏

[Smac29 in reply to RitaBa]

Hi RitaBa,

That’s great! I’m only done with the Obinutuzumab. I’m still on the Venetoclax until November. So hopefully it will be a long remission.

Sheryl

[RitaBa in reply to Smac29]

Sheryl I hope you get a really long remission. Do they give any indication?

[Floxxy]

I hope that all goes well for you. X

[RitaBa in reply to Floxxy]

🙏

[Nontas]

It is more easy than you think. I had my first therapy O at 18/1/21 . From yesterday i am in 400 mg V . My blood results are Excellent. Good Luck.

[RitaBa in reply to Nontas]

Yes you are really correct in that.

It is much easier than I was expecting !!!

So you are still early days.

Did they keep you in overnight?

[Nontas in reply to RitaBa]

Νο.

[prbs2707]

Hi I am going to follow you if I may as I start O&V in about 10 days time. Seems I will be following exactly the same treatment pathway as you over here in UK. It will be really good to see how a fellow traveller progresses. I send you every possible good wish to you and my hopes that the treatment is reaction free and the outcome wonderful. Patrick

[RitaBa in reply to prbs2707]

🙏

Actually follow the posts on this site.

It will allay your fears

[jt882]

Wishing you all the best. My dad starts this treatment next week and we are a bit nervous. It helps to read about the positive experiences.

[RitaBa in reply to jt882]

Have faith.

I was expecting the worst but was very pleasantly surprised

[Iupiter]

Hi RitaBa! I had a slight reaction towards the end of my very first O infusion about 6 months ago. Got some rash on feet and chest. The nurses were there and gave me some Benadryl and it quickly went away. After that I had 8 more infusions and never had another problem. I had my last one a month ago. Sorry for getting back to you late. Hope all went well and continues also. Good luck!

[RitaBa in reply to Iupiter]

Thanks Jupiter.

Actually the only other side effect I suffered was from the steroids. After my infusion, I would go home wanting to run a marathon !!!

I could not sleep either and spent hours cooking and cleaning instead.

I did ask the Clinic to reduce the steroids dose (which apparently is not weight related & I am ultra slim) but because I had had a bit of a reaction they were reluctant to do that yet.

Maybe after they start me on the Venetoclax they would on next infusion of Obinutuzumab, reduce the steroids infusion (currently 2 bags).