After 7.5 years on ibrutinb got told last week that this Thursday I will be starting V and R . Had terrible skin issues for last two years as some of you may know and they are still linking that to my COVID booster November 22 , and they are not sure if V+ R will stop it . But hopefully it will . Although I have no real large nodes etc except some in my stomach which the CT scan showed up my weight loss and bloods indicate treatment and they also took into account that skin biopsies show CLL infiltration and if course our skin is the biggest organ in our bodies. Anyway glad something is being done last two months I have really gone down hill and to top it all I think I now have a inguinale hernia which I will tell them about at the hospital. That happened last week as I have had prostate problems for a while and the extra strain I believe may have caused this . My V and R treatment will be fixed 24 months and hopefully if I get a few years or year after that they can restart V and R again which I like the sound off . Going to take the first 6 weeks off work as lots of hospital visits and hopefully may be ok to return to work after this period.
Starting V+R : After 7.5 years on ibrutinb got... - CLL Support
Starting V+R
Wishing you all the best with your next treatment and really hope it helps you. You have had a tough time these past few years. I had V+O and it was brilliant. A few bumps on the road, especially at the beginning, and some side effects but the benefits outweighed any negatives I was experiencing. Hope it will be the same for you. Let us know how you are doing. All the best 🙏🏻❤️
hope it all goes well, be well, Hoffy
Hi Cartwheels, you really had faced some thought challenges the past few years. Praying the next treatment really works for you. I will keep you in my prayers. 🙏🤗🙏
I too was on ibrutinib for 6 years it worked great for me but as I was on the Flair trial which is max 6 year duration this came to an end in January 2021 and I was great until sept 2023 then I needed more treatment. I started V&R in October 2023 till October 2025, so far so good it seems to be doing it's job. Good Luck with your treatment. Take care Sue x
Thanks sue , how did you get on with the ramp up ? I have booked six weeks off work so I don't have to worry about side effects early on etc . How was it for you x
Hi Cartwheels, the ramp up was OK from 50 to 100 got a thumping head and felt really hot but a couple of paracetamol and a fan did the trick. The remaining ramp ups went smoothly just tiring but the results were amazing, lymph nodes all dissappeared within 2 weeks even the tennis ball size one under my arm and by week 6 all bloods were within normal range. I hope you have the same results and good luck with your treatment. Let me know how you get on, take care Sue x
Thanks sue I will x
Good luck to you. I hope it goes well. I'm on V and R for fixed 2 year duration. I have 4 more months to go before I complete it. This is my second treatment, I completed 6 months of FCR in 2019. Xx
Thanks floxxy and I hope all good for you ,any advice? And how did your first few months go on V+R x
I have been pretty lucky. Fatigue has been my main problem. I tolerated the ramp up OK. Luckily, I don't live far from the hospital so blood tests weren't a problem. I did find it difficult taking my Venetoclax tablets in the morning so it was agreed that I could take them at lunch time with lots of water. My other issue is neutropenia. My neutrophils never really recovered from the chemo in 2019 so I'm on weekly Filgrastim injections.I just feel so lucky to have the NHS, a fantastic hospital only 20 minutes walk away and hopefully new treatments becoming available. X
I'm actually only a mile from my hospital as well so very handy,will let you know how things go x
Wishing you the best on your next treatment. I’ve been on Ibrutinib for nearly 8 years and it’s been amazing. I’m hopeful it will continue. After an horrendous reaction to a Moderna Covid Vaccine, I won’t be getting another Covid Vaccine.😢 Keep us updated on your progress. 🙏Sally
Good luck with all this.
Hello cartwheels
Hoping the V&R is effective in helping you so you can do more cartwheels. Blessings.
Your plan of taking some time off work is a good one. That way you can handle any contingencies and if everything goes smoothly, you’ll be well rested.
Keep us posted as you are able.
HI Cartwheels I wanted to share my husbands experience of V and R now he is 6 months in.I was really worried about the V ramp up period and it had built into a massive risk in my head. As it happens it went without any issues. His side effects have been minimal an occasional upset stomach.
R infusion makes him tired for about 48 hours then he is fine. His last infusion is the 21st November. I hope the remainder of his time on V is as straight forward
I hope this helps and I wish you smooth waters as you start your treatment. Drinking lots of water is crucial
Thanks all this is very reassuring to hear all the best
Hello.
My husband had V & R ~ 2 years fixed, and it really was okay… so much better for him than the FCR he had in 2015… where he was very nauseous and sick.
The ramp up part is a bit of a nuisance at first, but after that it really was just a matter of taking the tablets (easy for me to say, I know 😉), but it is very doable and, hopefully, you’ll be fine and have great results.
Wishing you lots of good luck,
Fran 🙂
Thanks all this really helps
V&O treatment 
V&R Treatment
Remission over .... venetoclax (&R) here we come
