Starting treatment

[Feavers]

Hi all, I have been told the time has come, they are saying V and O my question is, is it a good combination, anyone had this, looking for feedback thanks

[Guffy]

Hi Feavers. I'm due for the same treatment very soon. I'd be interested to hear how it goes. All the best!

[Feavers in reply to Guffy]

Will do, I am a bit worried but we will get there 🤞

[Guffy in reply to Feavers]

Me too. I've got all, the information, read about possible side effects, watched far too many Youtube clips (bad idea). You'll be in safe hands.👍

[Skyshark]

Due to temperature spiking during first IV it took 8 hours. After that it was a walk in the park. Poodle2 had a somewhat different experience.

Two NHS patients on HU have had very rare serious reactions to Obinutuzumab. One switched to second line Rituximab + Venetoclax the other to alternate first line Ibrutinib + Venetoclax. I believe that needed an Individual Funding Request.

[Feavers in reply to Skyshark]

Thanks for the response

[prbs2707]

A perfect combo at least it was for me. Started treatment in March 2021. Worked wonders and I'm still enjoying a healthy remission 4 years later. Bit of a hiccup with the first infusion of O (not unusual and the nurses were ready) after that it was pretty much plain sailing. The O infusion days can be long so take entertainment with you such as good book, music, tablet etc. I know you said you have read all the info so you will know the importance of drinking. The only downside will be the regular trips to the loo trailing your infusion drip stuff behind you !!! Hope it goes well. Lots of luck with everything. Best wishes Patrick

[Feavers in reply to prbs2707]

Thanks I hope I the same 🤞

[Sparkysparkplug in reply to prbs2707]

I had the same experience with O/V as you did exactly. My treatment was 2021 as well. I am also enjoying full remission to this date.

Good advice on all points . 😀

[prbs2707 in reply to Sparkysparkplug]

Good to know, we are CLL and O&V buddies!! Let's hope we both continue to skip down the remission road for years to come Ha Ha. Take care and best wishes. Patrick

[ArtistBlacksmith]

I did 12 months completed Feb 2023. Took it pretty well with only minor early side affects and no issues at all with the infusions. A bit of time at the hospital for the first month or two . Only issue for me is that I started treatment again 17 months after completion, BUT I have a complex case.

[Feavers in reply to ArtistBlacksmith]

Thanks, hope it all works out for you

[SEB0607]

I am currently on week 23 of O&V and for me it is working great, no side effects, full of energy, scans two weeks ago showed no sign of measurable disease anymore and when they did the MRD test over a month ago I was down to 22 CLL cells in 100000. With 25 weeks to go I am hoping this number is down to the 1 in a million by the time I finish. I was lucky to only experience a minor chill on my first O infusion and so far V going fine. I am now only having to go to hospital 1 x per 2 months so almost feels like I am back on W&W. The first couple of months are quite intensive in terms of hospital visits until you have ramped up the V. My advice is drink loads (and I mean loads) of water the whole time, exercise as much as you can and keep thinking positive that this is a 48 week journey towards hopefully a long remission. All the best and message me if you want any more information.

[Feavers in reply to SEB0607]

That has made me feel better, just need to positive, I new the day would come, 48 weeks 🤞👍

[BigBrownB]

morning!

I’m entering my 3rd cycle of V & O.

Much like some of the other replies, I had a reaction to the first IV of Omnituzibab, but thereafter it’s be absolutely fine.

It’s only natural to worry…..it’s the unknown. For me, one of my biggest worries was the ward….i struggled a bit at first to acknowledge that I was needing treatment and sitting on the ward with all my fellow cancer patients wasn’t something I thought I’d be doing at the ginger age of 52 (a bit naive of me I know) But all those worries eased immediately. The nurses on my ward were amazing and the support from the other patients was humbling.

I’m responding really well to the treatment. My lymphocyte count fell off a cliff after cycle one and has stayed there, so all good! I’ve still got another 3 cycles and then just venetoclax till November, but I’ve no side effects (still get tired periodically).

Good luck with your treatment and keep us posted.

Bridgit

[Feavers in reply to BigBrownB]

Thanks so much for the response 🤞

[Jim-Boy]

hi, currently in cycle 2 and ramp up period for V, only issue was was first infusion of O where I had a reaction, was back in next day, no issues from there, just about to go to 100mg of the V, so far so good, all numbers are looking good, best of luck, as stated by many, lots of water!

[Feavers in reply to Jim-Boy]

Yeah I know, but I could drink beers no problem 👍

[skytortoise]

hi Feavers, I asked the same question a few months ago. I am now in Cycle 2 and feeling very positive. The first infusion of O was a bit scary, but the nurses and docs were excellent. Since then I have not had any adverse side effects, either to O or V . My blood results are improving already. My Hb which would drop to 40-50 over a week is now regularly around 80-90. My spleen which had reached the midpoint is beginning to shrink again. Thanks again to sky shark and Len and others for the positive advice they gave me before I started treatment.

Good luck, Freddie

[Feavers in reply to skytortoise]

Yes thank you to everyone as made me feel better, only found out Friday, Here we go

[DrLV]

Dear Feavers:

I have been on V+O for 13 months. I have 11 months to go on venetoclax. I have tolerated both well. My bloodwork looks good and I am still teaching at the university.

Hydrate yourself. I get monthly B12 shots. I am at times a little fatigued, but that may be because I am 73 years old. LOL.

I had gut issues a couple days a week until I started using my blender and drinking a healthy juice every day: ginger, tumeric, black pepper, pineapple, nectarines, etc.

I am grateful every day for being alive. Life is good.

💕Dr. La Verne

[Feavers in reply to DrLV]

Thanks for the response, sounds like you are doing great

[DanBro1]

One monthly infusion of Obinutuzumab for 6 months and 12 months of 4/100mg Venclexta per day put me into remission for 2-1/2 years now. I had zero problems other than mild chills and lethargic for a couple of days at the start.... Good luck!

[Feavers in reply to DanBro1]

Good to hear, thank you

[BigDee]

Hello Feavers

Be sure to take someone with you that can watch you for your Obinutuzumab infusions. I had gastrointestinal issues through V&O treatment and has abated somewhat but still there one year post treatment. Still better than not treating CLL. Blessings.

[Feavers in reply to BigDee]

Thanks for the response, I am so glad we have this cumunaty

[BarneyFife]

I completed the O infusions with little discomfort. Make sure you drink lots of fluids before, during and after treatments. Good luck and keep us posted on how you are doing.

[Feavers in reply to BarneyFife]

Will do thanks good to know