when start venclexta

[sept149]

I just did first Obinutuzumab infusion. First day of 100cc hit me hard but second of 900cc was better count of WBC count went from over 12000 to a little over 5000. I have an infusion each week for two weeks then start the venclexta and continue on with it all thru my Obinutuzumab infusions and beyond. But here’s my question. Is this the common process? I have thought that I was to do all my infusions first then start the pills. I’ve gotten mixed messages maybe at least in my head I’m a bit confused about this. Can anyone help me out here. Thanks so very much to all of you

[LovecuresCLL]

I did O first, 3- 4 infusions, and then started the V pills. But things may have changed. So I am not sure. Your doctor should be willing to explain his protocol again to you.

It’s going to be alright though. Just take it one day at a time. And don’t hesitate to ask your doctor .

Best of luck,

John

[sept149 in reply to LovecuresCLL]

thanks for the encouraging word

[sept149 in reply to LovecuresCLL]

thanks

[Greenbunnies]

yes that's the protocol - we start the O infusions first, then after a few weeks we add on the V tablets. So the first six months is both treatments. After that we drop the O infusions and continue with V by itself.

Here is the schedule:

venclexta.com/previously-un...

[sept149 in reply to Greenbunnies]

thanks

[mfc86]

I had o infusion over 6 months and on V until November ,so it sounds like the same process as mine ,hope your as lucky as I have been with side effects , I’ve had virtually Nill …..been far easier than I thought ….. good luck 🤞

[sept149 in reply to mfc86]

thanks

[Nickjmh]

Good morning. That is exactly how mine has gone. I’ve had a few changes as the months have progressed. I started IV-chemo in September, 2022 when I was first diagnosed with CLL. The venetoclax  started 2 months later; 2 pills daily. By December 2022 my white blood count had gone from horrific highs to normal and they said that would be the last of my IV chemo (originally told I would be on IV chemo for 12 months ), and I would increase my venetolax to 4 pills per day. As of today’s date  I am on schedule to complete this pill regimen by September 15. Throughout this time, I’ve had no side effects whatsoever from the IV or pill chemos. I guess my only question is, could CLL come back later in life and what are the chances. Prior to this, I really have never been sick a day in my life. I am 66 and my 95 and 4 months old mother is quite healthy, moves slower and still has her mental capacity, along with opinion on everything that she’s pretty much had her whole life!😎

My father passed at 86 pretty much healthy his whole life as well.  This type of cancer has never occurred in either of my parents’ families. I am 66 YO, 6‘2 , weigh approximately 185 lbs  I am still required through this entire process to go to monthly blood testing and everything has been fine.Please keep us updated on your progress. Nick

[SofiaDeo in reply to Nickjmh]

The CLL could come back, no one knows the chances. It's a rare cancer, and these treatments are less than a decade old. Maybe 50 years from now CLL won't be "rare" and there will be enough data to answer questions like this. But results are very promising, people like me who were not expected to respond to older treatments and had numerous deaths, are responding to the new stuff & are still around. When I was first diagnosed, with my markers the historical data estimated 50% chance of dying within 5 years. I'm over a decade into this now, had 6 treatments and still able to do most things. IMO if you don't unduly stress yourself, and live a healthy lifestyle, you have a better chance of longer remissions.

[Nickjmh in reply to SofiaDeo]

Congratulations on your recovery. I would also add that I don’t plan on sitting around worrying about it. I’ve had a good life and if it ends this way, so be it.

I’ve seen so many outrageous things happening to people on the news lately, from random shootings to a new bride killed on her wedding night by a drunk driver, that this is the “peaceful” way to exit.

[sept149 in reply to Nickjmh]

thanks

[Pearlpink]

hi! This sounds like my regime. Weirdly, now I’m on just the venetoclax tablets and only go in for blood tests, followed up by telephone, I miss the camaraderie of the infusion days! I met so many wonderful people! Made some good friends!

[sept149 in reply to Pearlpink]

thanks

[sept149 in reply to Pearlpink]

thanks

[Wendy328]

I started on V first. I will start O on Thursday (6/8) I am in the US. I did have a couple of bumps in the road ramping up of V that resulted in each time a 3 day hospital day. I felt weak and had muscle fatigue each time.

[sept149 in reply to Wendy328]

thanks

[Skyshark]

Cycle 1 first 3 weeks 1000mg O, this is supposed to de-bulk. 4th week 2x10mg V. This allows them to assess the effects of V without much O.

Cycle 2 first day O + 50mg V, continue V for week 1. This checks for interactions of O with a low dose of V. Week 2, 100mg V. Week 3 200mg V. Week 4 400mg V.

Cycles 4-6, day 1, 1000 mg O. V 400mg for whole cycle.

Cycles 7-12 400mg V for whole cycle, no O.

[sept149 in reply to Skyshark]

thanks