Hi,
CLL watch and wait since 2020.
My doctor(s) have recommended I start treatment. I’ve been given 2 options.
First, Ventaclax and Gazyva. Treatment lasts 13 months and done.
Second, Zanubrutinib 2 times daily indefinitely.
Anyone here had personal experiences with these treatments?
I like the idea of 13 months of treatment instead of lifelong.
Thanks!
I've been on Zanabrutinib/Brukinsa for 11 months now and it has worked wonders. I was on watch & wait for 7 years until I finally needed treatment. I started Brukinsa in May 2023 and within 7 months my counts are all in the normal range. I take all four of my capsules (4x80mg) in the morning and I'm done. I have had no issues with Brukinsa. Its like taking a placebo. A lot of people take a handful of vitamins every morning anyway so what's the difference its just 4 capsules? And who says its indefinite anyway? As fast as science is moving in the CLL space who knows when there will be a new and better treatment or better yet........ a cure.
Warm welcome to you, as I see this is your first post. I would suggest you do a search here and type in Obinutuzumab and Venetoclax. Then do another one for the Btk of your choice. You will get all the insight from members of have been there and done that.That is what I have done and I chose O and V for the same reason. One question that you will not be able to get an answer to. Is how will your body tolerate the treatment? Meaning no side effects, very minor ones or really uncomfortable ones.
Type the searches and you will find what your looking for. Its difficult for anyone here to give you any more advice than that. When we know nothing about your disease course. Markers, unmutated etc etc etc.
All the best to you and may your choice be the best one for you.
Welcome Nana1961,
Further to Pacificview 's helpful suggestion, there are two different ways you can search HealthUnlocked; a search of the entire site of 300+ health communities, which will return only unlocked posts, that's those visible to internet searches, such as this your first post, then searches within a community, which includes locked and unlocked posts.
There are nearly 3,200 posts mentioning "venetoclax Venclexta obinutuzumab Gazyva"
healthunlocked.com/cllsuppo...
healthunlocked.com/cllsuppo...
and 42 posts mentioning zanubrutinib Brukinsa
healthunlocked.com/cllsuppo...
zanubrutinib is a second generation BTKi, very similar in effectiveness to a longer approved BTKi acalabrutinib Calquence, for which there are over 1, 500 posts
healthunlocked.com/cllsuppo...
There's more on navigating this site here: healthunlocked.com/cllsuppo...
Neil
Thank you so much! What a difference in the search 😊
Hi I was diagnosed stage 4( 3 yrs ago), went straight to O+Ibrutinib(6 cycles) and was in uMDR within 250 days. I am on Acalabeutinib twice daily, no issues and my monthly bloods remain stable and uMRD checked every six months. I live a pre covid pre CLL life style as a full time dad to my 6 and 4 Yr olds....I will be 61 next birth day
I chose the BTK route, Acalabrutinib, since I am still active and work. I had side effects the first few weeks including strong headaches. It has been easy to take. Someone said it’s like taking your vitamins. I am looking to switch to Zanabrutinib because I am in low percentile of continued headaches. Continue to research and choose the best option for yourself. If your in the US work with a financial navigator over the cost of the medication. I wish you the best!😊
Thank you! I hope the switch helps. Im very fortunate as my insurance covers both with pretty affordable co-pays!
Good to hear! Let us know how you do. Take care. Be well!!!😘
In case you were not aware, the mfg of Brukinsa provides co-pay support for ppl on commercial insurance -- not Medicare. The cost is $0 per prescription. See Brukinsacopay.com for details. I was told that the specialty pharmacies that fill these do not always bring this up so you need to ask to speak to someone that is in charge. I have a note that says to be sure the pharmacy activates this on your behalf BEFORE paying any co-pays. I'm starting in the next few weeks so I'll be going thru this shortly.
Hi! I had V + O in 2020. I finished my treatment in Sept. 2021. I was one of the unfortunate ones who initially had very bad side effects when I first started the infusions. However, I had an awesome medical team, especially the nurses, and they quickly got everything under control. By the time I was on my third full infusion, I had no problems at all. I’m now approaching three years with normal labs and I feel better than I have in years. Looking back I’m glad I went this route and am hoping for many more years before I need more treatment. Good luck to you and I pray whatever you choose works well for you.
V and O is 11 months, not 13. Twelve 4 week cycles.
Other than all the blood tests and 3x hospital stays (10 days/7 nights) for a "high risk TLS" ramp up, V+O has been an easy treatment for me.
Hello Nana1961
Personal preference, depending on work schedule, family life and activities. Blessings. I choose B+R for first and V&O for second treatment.
On watch and wait for 2 years. Since then, over 10 years, have been on a variety of treatments and all have worked - some with more side effects than others. After stopping all went down hill fairly quickly. Have now been on Brukinsa/Zanibrutinib beginning with 4 pills a day for first year and now 3 a day for nearly 3 years with excellent results/normal range and almost zero side effects. Best wishes to all CLL folks.
Vent and Gayzva have had a good run. a lot of people have been on it with good results, however, sometimes it doesnt go as planned and some people have to go back into treatment. DO not let this stop you from trying the treatment just know that sometimes you will need treatment again. Thats the story with CLL. Sometimes it does come back. the good news is that there are always new drugs on the market.
I did the Gazyva and Venclexta route and it worked great for me. No side effects, no infections and I never missed work except for infusion days. I did get COVID once but no symptoms. I thought it was an amazing treatment. That's my experience. Of course everyone has a different experience.
Like you I was formally diagnosed in 2020 and at the end of May learned I needed to start 'treatment. I was offered a choice of three treatments but I sensed my consultant wanted me to go for Venetoclax and Obinutuzimab which was the one I chose to go for after reading up on them all.
I have had learned to be organised with how and when I take Venetoclax and the other drugs I was given. I was very anxious about the infusions in case I had a bad reaction and nobody noticed but you are so well looked after that I nedn't have worried. Infusion days ironically gave me the opportunity to catch up on sleep and read. My only reaction to these was on the first day of the first infusion when I got very cold - sorted with a blanket. I actually thought it was because of the air conditioning. Then I got lower back pain but I thought this was from just sitting all day. I was very lucky. That first night at home I slept like a baby.
Thank you!
How are you doing now?
I am in haematological remission at the moment. Try not to think about the final results in a couple of months! I get tired but I had Covid for the first time earlier this year and it took a long time to go. In addition my husband's mobility is limited so get emotional rather than practical support.
Hi NanaThanks for asking this question, I am almost in the same situation as I am waiting for the options at my next appointment. It's been so positive to read the answers. Hope it goes well 😊
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