I'm still not sure of the whole protocol with the Obinutuzumab +Venetoclax treatment.
My oncologist is vague, or perhaps, my mind is not focused when I am in his office.
I understood that it will be 5 or 6 visits per month for infusion and this for a whole year?
Is that correct?
Also that I should be careful with infections.
I was excited at the prospect of a new treatment after Calquence ( Alcalabrutinib) which caused afib for me, so was reduced to one capsule per day along with heart meds.
Now I am terrified.
Thank you for encouraging words 🙏🏼
Written by
unairdefamille
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The first two months of Gazyva (obinutuzumab) + Venclexta (venetoclax) is complex with lots of clinic visits, most of the infusions and the frequent blood testing during the Ven ramp up.
In month 1 you will have most of the infusions, and in month 2 you will have most of the blood tests.
Months 3 to 6 may have one infusion per month or none, depending on the protocol your doctor chooses.
Beyond that - there are only daily pills and infrequent blood tests, no infusions.
Please don’t be terrified. It’s a lot of visits for a couple of months but you will get though it. I’ve found it is the apprehension before the appointments that is the worst part. Similar to the apprehension you are feeling ahead of the treatment itself. I had a couple of rough moments in the early months but I’ve learned to put my head down and plow through appointments and focus on the on the horizon when the treatment frequency slows. I’m in month eight and I take four 100mg V tablets with my dinner each evening and see the doctor or NP quarterly.
You will need to be careful about infections especially in the early months but you will adapt and get through that period. Just focus on how lucky you are to have such wonderful treatment options. It wasn’t too long ago that these options were unavailable.
I am doing V&O now after having to stop Rituximab. Obinutuzimab first cycle is infusion on day 1 (100 ml), day 2 900 ml, day 8 one infusion, day 15 one infusion, then monthly one infusion for 5 months. Venetoclax ramp up over 4 weeks, 20 mg one week, 50 mg for one week, 100 mg one week, 200 mg for one week, 400 mg after for one year or 2 years if relapsed. During ramp up week, I had 2 blood test each week.
I am doing better on the obinutuzimab. I still react but they are able to control them. Please know, I am not the norm. Most people have a reaction the first time but do absolutely fine with the rest of the infusions. I do fine on the Venetoclax, no side effects. I am on a reduced dose of 200.
I finished the same treatment in June. I kept a diary of my journey if you are interested, feel free to read my previous posts. The first two to three months were quite full on but once you ramp up to the full dose of Venetoclax, things settle down and you find your new rhythm. The drugs are very powerful and I felt better almost immediately. The doctors and the whole team are very experienced and keep you safe. All the best.
My last ‘O’ infusion tomorrow 😀. Other than a hospital visit when my neutrophils crashed (and I got an infection) I found V and O very easy. I did not find anything to be apprehensive about. Just a bit of a pain doing the numerous blood tests during V ramp up. Good luck.
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