Imbruvica, which has worked well for 2 1/2 years has stopped working and WBC are climbing.
Next week I will begin Gazyva (infusions) and Venclexta. Has anyone else been on this regime and what info can you share about it? Thanks.
Imbruvica, which has worked well for 2 1/2 years has stopped working and WBC are climbing.
Next week I will begin Gazyva (infusions) and Venclexta. Has anyone else been on this regime and what info can you share about it? Thanks.
Hi Phyllis731,
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Your question is one of the most popular here, there are lots of previous postings that may help with answers. Some use the abbreviation V&O or alternate names like Obinutuzumab (Gazyva) plus Venetoclax (Venclexta) and can be found on this page in the box labeled "Related Posts"
Here are a few:
*Starting Venetoclax next week healthunlocked.com/cllsuppo...
*Ibrutinib/Venetoclax Journey week 11 (start) healthunlocked.com/cllsuppo...
*Started Gazyva and Venetoclax healthunlocked.com/cllsuppo...
As you look on any of those pages look for the Related Posts box, since the contents will change with the different title wording.
Many members have the Obin / Gazyva infusions first and Venetoclax after a few weeks.
Following the hydration and blood testing steps is important, especially if you have large nodes and spleen or a high ALC / Lymph# see: venclextahcp.com/cll/dosing...
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And many more here: healthunlocked.com/cllsuppo...
You may need to scan through the list of 2340 postings to pick the appropriate ones from the summaries.
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Len
I am currently on that same treatment and would be happy to answer any questions you may have. We are all different as you will see with other post, but it has been a painless easy treatment for me so far. I take my final Gazyva infusion 3/20/23. The first infusion seems to be the only one that can cause a mild to more severe reaction . They are ready for any reaction you may have. Then the infusions are pretty smooth sailing. The Venclexta for me has went with zero side effects. I highly recommend taking it with your evening meal. I start eating then take the pills and continue eating. Many people recommended that to me. I can't even tell I've taken anything. My blood work has been perfect with the exception of a slight dip in neutrophils the third week after infusion, nothing serious. I work everyday and live my normal life. So far no infections or viruses. I guess I do have one side effect and that is constipation. I use senokat when it gets too much. No biggy and not that unusual for me even before CLL. My blood work was never that bad, I had a lymph node presentation that sent me to treatment. I wish you well on this new treatment and hope you breeze right through it. The first month is kind of a pain with four infusions then it settles down and before you know it your done. 🤞For deep remissions for all of us. Please feel free to ask any questions. I will do my best to answer them if I can. I am in US Michigan.
Thanks so much for your reply...It helps a lot and takes away some of my fears and leaves me with hope that I will tolerate it well. I start infusion 1 next Wed. I am in Grand Rapids., MI.
Again, appreciate your sharing Gradyboy.
You are very welcome. We are practically neighbors. I think you will be very happy with this treatment. Everyone is scared to start but I bet after the first two infusions you will see how easy it is. I will be praying for you to breeze right through it. I am actually a little sad my infusions are coming to an end. I'm happy don't get me wrong, but I kind of enjoy my time there and always go home feeling great. Can't wait to hear from you and how it is going.
hi Phyllis. I had my last Gazyva infusion over two years ago and my last Venclexta in September of 2021. I had fantastic results and my blood counts have settled into the middle of desired ranges and are staying there. Only rough part was first Gazyva infusion, and sore thumb joints from the Venclexta. My energy level is much better. I still get blood work every three months, so I guess this never truly goes away, but am very thankful for this drug combo.
Hello Phyllis731
V&O is one of those things where you prepare for everything and have a nothingburger. I am 7 months into V&O which other than first infusion of Gazyva has been fairly smooth. I have had few bouts of nausea and diarrhea with Venclexta, but more of an inconvenience with reduced dosage from 400 mg, then back to 400 mg within a week. Blessings.
Have been on v&o for 6 months. As others have said, the first couple of months are time consuming but you get used to it. The first infusion is key as that's when you're most likely to have a reaction, but I'm sure your providers know that and will be ready. I've had zero side effects, and my counts approach normal. Feeling really good. I do get ivig infusions every other month to support immune system, but overall thus has been super effective for me. Be sure you have a cll expert on your team.
Hi Phyllis:
I’m another V + O patient who received it second line. I started about 3 1/2 months ago and the treatments and side effects have been non-existent. That being said, the fear and anguish upfront and early in the treatment was difficult. If you can manage your emotions you will find the treatment itself isn’t usually bad. Be aware that you are at a higher risk of infection, stay hydrated and maintain a positive attitude and you will sail through this.
Wherever you go, whatever you do, may the luck of the Irish be there with you. ☘️☘️☘️☘️. Happy St Patrick’s Day!!
Mark