Zanubrutinib or Venetaclax with Gazyva??

[Nana1961]

Can everyone please tell me their experience with these treatments? I’ve been given the options of either if trial not ready.

I was suppose to start a phase 3 clinical trial at Moffitt but it’s been delayed at least 3-4 weeks and I may need to start treatment sooner.

Thanks in advance….

[PennyLane2024]

Ask your CLL Specialist.

[DriedSeaweed]

They are both good options. It boils down to preference and whether you have a comorbidity. You will have the option to switch later if you do not tolerate one. Also, you get the chance to use the other if you become resistant.

I don’t think you can make a bad decision. You and your doctor need to figure out what is best for you in this moment. The only specific suggestion I hear mentioned frequently is that if you have 17p or TP53 mutation there seems to be a preference for BTKi (zanubrutinib or acalabrutinib) over venetoclax plus Gazyva.

Does your doctor have a preference given your situation?

I often rattle on about this and that during my appointments but I ask them to tell me what to do. I feel like I have found a group of doctors I trust so I just roll with it.

[Nana1961 in reply to DriedSeaweed]

Thanks for your input.

[LeoPa]

O+V is more hassle, more monitoring but fixed duration. Z is less hassle but taken for life or till you develop resistance. What's your preference? Not my experience just what I read here. Lot's of posts describing experiences with both treatments.

[Nana1961 in reply to LeoPa]

Thank you.

[Seagrape]

Thank you for sharing your question. My husband has an appointment at Moffitt in 2 weeks to help him decide on treatments. His local oncologist gave him the same choices. He is leaning towards O+V, bc he likes the fixed duration. He needs treatment asap, as he has repeated colds/sinus infections - lost most hearing, lymph nodes bulky, 3 new nodules in lungs that we don't know what they are yet, etc, weight loss, etc. I understand what you mean when you say you don't know if you can wait 3 or 4 weeks. Thankfully, all the options are good ones, as others have shared their positive responses. What a blessing this wonderful community is to share their wisdom and advice. Their input will give you the knowledge that you and your Dr's need to make the right choice for you. Prayers for all the best for you.

[Nana1961 in reply to Seagrape]

Thank you. Sending prayers for you and your husband as well.

[Flute117]

I had O + V and no issues with the O infusions. I actually did not mind going to the cancer center for the infusions. It was a very calm atmosphere. (My infusions began August 2020 during the height of Covid when I really was going nowhere else, so it was a welcome change from being home.) I was glad I opted for time limited treatment.

It’s all a very personal decision, and one your specialist should be able to help with. Best of luck on your treatment journey.

[Nana1961 in reply to Flute117]

Thanks for your input.

[Sewster]

I am mid-way through my 12-month limited treatment plan of O + V. Overall, it has been effective…. My lab values are great. Side effects have been minimal, but there have been some ….headaches and insomnia with Obinutuzamab; nausea & constipation with Venetoclax. I am finished with the Obin infusions (hooray) but take 400 mg Venetoclax daily (through December).

I found eating fat with my meal before taking the Venetoclax to be the most helpful with nausea - ice cream being my fave! 😉

I tried Zofran and got horrible constipation so quit that. It’s summer and I can be more active so …. Bring on the ice cream!!!

[Nana1961 in reply to Sewster]

Thanks for your input.

Best of luck with the rest of your treatment!

[biplane]

Hi I chose the O&V because of the fixed 12 cycles, it worked wonders and now a year out all my numbers are normal. I did have the usual reaction to the first O infusion and had a nasty rash on my arms which disappeared 5 weeks after finishing O. I found the 400mg V caused me to feel a bit off for a short time each day but was able to cope.

[Nana1961]

Hey,

What the usual first reaction??

Thanks

[AussieNeil Partner Administrator in reply to Nana1961]

I don't know that there's a 'usual' first reaction with obinutuzumab. What's usual with obinutuzumab is that if you are going to have an infusion reaction, it will nearly always happen during your first infusion and that's highly likely to be the only infusion reaction you'll have - the remaining 8 infusions will just be long and boring. Obinutuzumab infusion reactions also tend to come on suddenly, so let your nurses know anytime you feel at all different during your infusion, so that they can monitor you more closely and respond sooner.

I developed uncontrollable contractions, mainly in my legs, just after my nurse finished taking my observations. My wife had to run after her to report that I urgently needed attention. The rest of my infusions were boring and without incident. The first two obinutuzumab infusions were the turning point in my recovery.

Neil