This trial is going to reopen- Called CAPTIVA... - CLL Support

CLL Support

22,506 members38,655 posts

This trial is going to reopen- Called CAPTIVATE. Ibrutinib plus venetoclax study sponsored by Pharmacyclics - Study Number PCYC-1142 .

Hoffy profile image
27 Replies

FYI,

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.

clinicaltrials.gov/ct2/show...

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

Written by
Hoffy profile image
Hoffy
To view profiles and participate in discussions please or .
Read more about...
27 Replies
BeckyLUSA profile image
BeckyLUSA

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.

BeckyLUSA

BCTexas profile image
BCTexas in reply to BeckyLUSA

Hi Becky.. Glad you are doing well.

BCTexas profile image
BCTexas

Excellent info. I start Venetoclax tomorrow. I have done well so far on IB. 😁👍

Justasheet1 profile image
Justasheet1 in reply to BCTexas

BC,

I wish you great success tomorrow!

Jeff

BCTexas profile image
BCTexas in reply to Justasheet1

Thank you.

in reply to BCTexas

I follow in turn wishing you great success.

Nick

BCTexas profile image
BCTexas in reply to

Thanks.. I'm lucky this trial is available.

Barbshow profile image
Barbshow in reply to BCTexas

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.

BCTexas profile image
BCTexas in reply to Barbshow

Thank you. I'm in good hands at MD Anderson. Glad to hear your husband is doing well.

pkpayne profile image
pkpayne

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.

CLLdaughters profile image
CLLdaughters

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!

Hoffy profile image
Hoffy

I hear good results so far. I think combos are showing good results in general. Hopefully time limited treatment as well.

Koyangi2 profile image
Koyangi2 in reply to Hoffy

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?

Hoffy profile image
Hoffy in reply to Koyangi2

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 on the trial out of UC San Diego .

Do you get randomized soon?

Hoffy,

MonD profile image
MonD

Did this ever reopen and is it still recruiting?

Cllcanada profile image
CllcanadaTop Poster CURE Hero in reply to MonD

It closed last fall

clinicaltrials.gov/ct2/show...

MonD profile image
MonD in reply to Cllcanada

Post was January 2018 so that is why was confusing. You are a great source of knowledge and support!!

Cllcanada profile image
CllcanadaTop Poster CURE Hero in reply to MonD

There are other trials using Imbruvica (ibrutinib) and venetoclax do a search on the clinical trial database

MonD profile image
MonD in reply to Cllcanada

Only treatment naive once so want to optimize first line treatment and. Heck out all options! Are you on treatment?

Cllcanada profile image
CllcanadaTop Poster CURE Hero in reply to MonD

No... no longer in treatment.. but I have had my share....

FR, RCHOP, radiotherapy, RCEP, ibrutinib, idelalisib

I agree you only have one first treatment... you want as deep a remission as possible...😀

~chris

MonD profile image
MonD in reply to Cllcanada

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.

Hoffy profile image
Hoffy in reply to MonD

Sounds like you can still wait. Other trials might open. You are in good hands with Furman though.

fell profile image
fell in reply to MonD

Hi MonD,

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.

MonD profile image
MonD in reply to fell

Thank you. I will call Philadelphia. Furman said his is closed. Hope you are doing well!!!

fell profile image
fell in reply to MonD

Thanks for your good wishes :)

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.

Wishing you the best of luck!

Fell

MonD profile image
MonD in reply to fell

Thank you!

Hoffy profile image
Hoffy in reply to MonD

Thanks !

You may also like...

Update- My Imbruvica plus Venetoclax Captivate trial.

say MRD- undetectable instead of MRD Negative. I am most likely on a placebo. Per the trial I am

Venetoclax and ibrutinib trial

I’m on month 19 of a 26 month trial taking Venetoclax & ibrutinib plus aciclovir, co-trimoxazole,...

Starting Ibrutinib plus Venetoclax Trial at MDA

I will be starting the Ibrutinib plus Venetoclax trial at MDA. My platelets have dropped from around

I am now in the next phase of the Captivate Imbruvica plus Venetoclax trial. I have been Ramdomized!!!

already MRD negative in the bone marrow. My disease was very aggressive before I started the...

ASH 2019: U-MRD by subgroup (ibrutinib+venetoclax) CAPTIVATE trial

achieved U-MRD4 in BM after 12 cycles of ibrutinib + venetoclax. This is shown as the dashed...