Living with cll

[gelato]

Good results with Obintuzumab Gazya Feel great Has anyone been on this?

[cllady01 Former Volunteer]

It would be helpful to others to have you tell us about your CLL---is this the first treatment? Are you on Obiniutuzumab only? What were your symptoms that made the treatment be as it is for you?

[gelato in reply to cllady01]

Hi there I had a very high white blood count after 10 years of never a problem This is my first time with the treatment Is Gazya C3 Obinutzumab

[WinJ3]

I was treated with it and had about eight months remission. Hope your will be longer.

Win

[gelato in reply to WinJ3]

Hi WinJ3 How was your experience with the chemo Sick only first time than body got use to it also did you gain weight with the treatment?

[WinJ3 in reply to gelato]

Yes Gelato, I did gain a few pounds. I had all six cycles and didn't get sick and no side effects. My wbc count dropped like a rock on my second infusion. I felt like I could run a mile after my second infusion. My doctor said it was cause by all the steroids. He was correct.........I soon returned to tired me😐.... I wish it was a longer remission, but I can't complain.

I am now on Ibrutinib.

Win

[gelato in reply to WinJ3]

Hi Win thank you for your info The exact thing is happening to me I get fatigue after but than fine not happy with the weight gain this is my 2 cycle. White blood went way down. How do you like the drug ibrutinib ? Lots of cll people are on that.

[JimboW]

Your Oncologist remains your best source of advice. I completed the sixth sequence of Gazyva in January 2020. Effects were remarkable as my blood chemistry normalized except for platelet count that remains substantially low. Oncologist has me on a 5 year test, watch, and wait routine. My first post treatment CT scan is in a week....Still have somewhat sore lymph glands....take it one day at a time....good fortune to you

[bupton]

I had this treatment in 2018 and did wonderfully well....my numbers were all in normal range from the beginning, but the CLL manifested itself as leukemia cutis. Unfortunately it returned this year and I am again being treated with Gazyva and supplementing with Veneteclax that I began yesterday and will take for a year. Dr. is hoping to get a longer remission with this pill. Good luck to you. I, like you, had no side effects.

[gelato]

Thank you both for responding to me. The drug is great, I was just wondering if the numbers of wbc drop Why do you still have to keep going for the Chemo?

[IRN83]

I had completed my Venetoclax ramp up and ended up in the hospital prior to starting Gazyva. The Venetoclax was definitely a downward spiral and my oncologist almost stopped treatments. But after starting the Gazyva Everything got great. I felt like gazyva did more for me than the Venetoclax. Compared to FCR and BR Gazyva is like candy. The only symptoms I had from the Gazyva was a short time of jitters and inability to think straight. Both symptoms were gone the next morning.

[gelato]

I feel Gazyva has really helped me so far but I have 4 more treatments to go every 28 days now I will finish in July

[dcfrey645]

Yes....finished treatment in Jan. Reduced very swollen nodes in the back of my tongue (linguial tonsils)....still on Venclexta till sept. All is well, just make sure to drink at least close to 60 ounces of water a day....best wishes.