Extended treatment

[Cazma]

Hi I'm expecting to end treatment in October after ibunitzimab and Venetoclax However I've had my dosage altered and I'm concerned that if I don't maintain 400g of Venetoclax my treatment will be extended. Does anyone have any experience to share

[Newdawn Administrator]

It sounds like falling platelet counts have resulted in the recommended reduced dosage of Venetoclax. I think you mean you’re on Obinutuzumab not ibunitzimab? I’m not sure how long you’ve been on these meds or whether any testing has been done to measure response but I reduced my Venetoclax to 300 mg for the final year of my trial (I&V) and still maintained uMRD (undetectable levels of CLL cells in my blood and bone marrow). I wouldn’t worry. It’s still attainable at a slightly reduced dosage and your doctor obviously recommends it to protect your platelet count.

Best wishes,

Newdawn

[Cazma in reply to Newdawn]

I'm six months in to a 12 month treatment, my biggest concern is that my health insurance will end with my employment in Germany in December. I intend to retire to Spain but I'm a British citizen and could return to the UK, however this is not my preferred choice. Currently I'm taking 300mg 3 times a week and 400 4 times per week. My oncologist tests my blood one a week and makes dosage alterations as she sees fit.

[Newdawn Administrator in reply to Cazma]

That’s pretty vigilant oversight Cazma and it’s clear your oncologist is keeping a tight watching brief. Your dosage is only slightly reduced. Are your blood results improving (apart from the thrombocytopenia)?

Good luck in your decision as to where to settle and I can appreciate the treatment implications for where you decide to go. That must be a driving factor for you.

Newdawn

[LeoPa in reply to Cazma]

What does your oncologist say?

[SandandWind]

In the Obinutuzumab, Ibrutinib and Venetoclax trial my Venetoclax was reduced to 200mg shortly after I got to a full dose. I finished the treatment on the same timeframe as if I had been at the planned dose and still reached UMRD.

[Catnap7]

Hi I was on I/V trial with a reduction of both drugs and reached MRD in both blood and bone marrow after a year into the trial At the time of the reduction I was very

worried it would interrupt the plan The reduction was a blessing!

Catnap7