The ibrutinib plus venetoclax study sponsored by Pharmacyclics is the PCYC-1142 trial. This trial has enrolled 150 patients thus far and was closed to new enrollment until this week but I am told enrollment has been reopened. I think it is about 6 locations. I am out of UC San Diego.
I am almost 1 year in and doing well so far. I am MRD Negative in the blood after 9 months. CR on MRI.
Title: Phase 2 Study of the Combination of Ibrutinib Plus Venetoclax in Subjects With Treatment-naïve Chronic Lymphocytic Leukemia/Small Lymphocytic Lymphoma
Be well,
Hoffy
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Hoffy
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I am in the same trial since August. Very good results so far. All nodes now normal size, and ALC and WBC well within normal range. I would definitely try to get into this is you need treatment and are treatment naive.
Wishing you well, BC. My husband will be on the 4th week of the Ven ramp up this week. He’s doing well, other than a seemingly unrelated gout episode last week. Hope your escalation is smooth and effective.
Hi BCTexas. Barbshow’s hudband and I ate in the same trial at M D Anderson and the exact same schedule - although with different doctors. I was in the hospital when he was having hydration so we were able to meet. It’s wonderful all the caring considerate people you meet on this journey. You are in the best place so good luck with your ramp up.
Thank you for sharing! We are nearing needing to start my dads treatment and we were wishing this trial were still open! We were headed for treatment soon with just I, but I+V sounds better. My Dad is a good candidate for trials (treatment naive, 63 and otherwise healthy, mutated, trisomy12. If anyone has advice for or against going for this trial, please let me know! Thank you!
Hello from CA. I just found this site & am on the Ibrutinib/Venetoclax trial, going on my second year and doing very well, number wise. Since your last post (available that I could find) was a year ago, how are you doing? I have recently noticed, within the last six months, new side effects of nail splitting, dry skin & dry mouth. Dry mouth has severely affected my lower anterior gums. Using Biotene now which has helped but of course cannot reverse damage done. Have you experienced Nything like that?
Koyangi2, I am doing well so far. I got to MRD negative after 14 months and I was randomized. I am very likely now on a placebo since my side effects went away.
Oregano oil on my tooth brush worked for mouth sores. Put on a drop them rinse with a little water since it is strong.
The nail - finger tip stuff with imbruvica is pain but ok all considered. My nails are much better on the placebo!!
I am 13q mutated so not high risk so Captivate appears so far as only trial that could have been good. Furman is recommending ibrutinib. I feel fine but in stage 3 so time but hard to consider any.
I enrolled in this trial in February of this year. I didn't find it on the NIH site - I called Wilmot Cancer Centre in Rochester on a whim. I know that it also reopened in San Diego.
It is certainly worth a try calling around! It was only because Hoffy made this post that I thought I might as well see if it's open in either Buffalo or Rochester as I live in Canada and these are the two closest US cities to me. This trial is showing excellent results for a lot of people.
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