Have you had experience with Venetoclax?

[andrewschorr]

Wherever you are in the world, if you feel you have benefited from Ventoclax, please let me know. Your story could be part of a brief video to be shown to the people who developed this important CLL drug. Many of the developers have never met a patient so it helps them be motivated to help us live better and longer. If you are interested please email my colleague, Julie Fuller, at: [e-mail]

Thanks!

[KevinCLLITP]

Venetoclax was the 9th drug I had in 10 years, including three brutinibs, all of which failed to corral my CLL. I am in the 20th month of Venetoclax and even though I have some late onset side effects, I am doing wonderful and finally see a runway in front of me rather than a broken up rocky road. Come end of July it will all be done.

[nvp815]

I am starting it in two days! I will be happy to share my experience in the future. Thanks for all you do Andrew!!!

Nan

[soapstone]

I was on venetoclax for 2 years and have been CLL free for 2 1/2 years - was originally on Imbruvica for 2 1/2 years and it did not work - the V worked immediately

[Schubert1870]

I’ve been on mono therapy Venetoclax for exactly one year. I was formerly taking Imbruvica, in which I experienced more side effects. Venetoclax is by far the greatest thus far, and except for the initial ramp up, I’ve had zero side effects. I hope it will carry me through a few more years.

[Shepherd777]

My wife is 17P and TP53. She was on Venetoclax for about a year, but never got above three pills a day due to side effects. Dropped back to 2 pills a day for most of the time. She had normal blood work within about 4 weeks so after 12 months took a Venetoclax vacation. She was labelled in clinical remission at that time. She has remained in clinical remission for 3 years and 3 months. Blood work has risen some, but still in the acceptable perimeters.

[Ninagram]

Had wonderful results with Venetoclax. Been in remission for 2 years. Jo

[Hiker13]

I started obinutuzumab July 2021 and venetoclax August 2021. Everything has gone perfectly so far. I did go to the hospital for the first venetoclax dose and for the first ramp up. Stayed two days each time but hard no problems. Will continue venetoclax until this August. Most blood tests results are in the normal range or very close to it. I live an active life including hiking three days a week.Would be happy to share my experience.

[roszika]

FYI Veneteclax was developed here in Melbourne Australia at the MacFarlane Burnett Institute and the developers would have had a lot of feedback from specialist's patients including mine here in Melbourne ( In fact through all of Aus) re patients experience being on Veneteclax including my own for 2 years on 400mg V from April 2019 to March 2021

[OmBewok]

Dear Andrew,

Firstly, thank you very sincerely for all you have done & continue to do for CLL patients, across the world. I certainly appreciate it.

With regard to Venetoclax, I started on Obinutuzumab last November in combination with Venetoclax soon after. I had my last O infusion last week, and will be continuing with V until October on current trends. I am keeping my fingers crossed for a long remission!

As I have not yet completed my V treatment it is probably too early to appear in a video about the treatment, but to this point in time it has gone wonderfully. I had a strong response to the first 2 O infusions in Week 1 that required hospitalisation for three nights with Neutropenia, but by Week 2 I was back in good form with few if any side effects (apart from predictable fatigue). My blood results were effectively back into the normal range by Week 2.

I have had no side effects of any significance from the V. Prior to the commencement of my treatment last year, my specialist encouraged me saying I'd probably handle the treatment much better than I was anticipating. He was absolutely correct. I would recommend it to anyone in a similar situation to me. I am in awe of the medical scientists and practioners who developed & refined these drugs, and the patients who went through the clinical trials to determine their usage. As a beneficiary, I can only say 'thank you' most sincerely.

Yours,

Om

[1492wart]

I agree! Thank you for everything you do!

I have been on Venclexta since July 2021. I take 400 mg a day. I do everything and go everywhere!! I’m living the best life I can. I have been told by my doc that I will stop taking it next May.

[bagelstreet225]

Hi Andrew,

I was diagnosed with CLL/SLL. I have SLL. Thank you for the Patient Empowerment Network. I've watched a number of videos and learned a great deal. I am at NYU but I need a CLL expert. Nicole LaManna is one of the leading CLL experts. Thoughts?

Thank you,

Pat

[Newdawn Administrator in reply to bagelstreet225]

This post is now over 2 yrs old bagelstreet and for a specific information collating purpose on Venetoclax.

Newdawn

[Skyshark]

I'm a week off from the end of 12 cycles V+O. Like OmBewok I feel it's too early to say much.

But I haven't noticed any effects at all that can be ascribed to the Venetoclax alone. The first dose of Obinutuzumab ripped into the lymph cells in my blood reducing them from over 100x10^9/L to about 12x10^9/L by day 5. My blood tests were "normal" before the start of Venetoclax and have remained normal throughout. All squishy lymph nodes round my neck had gone by week 3 but some larger harder nodes remained, I was adjudged to be high risk of TLS and similar to Hiker13 had the first 3x Venetoclax doses of 20mg and the first 3x ramp up doses to 50mg as an inpatient. All lymph nodes were gone before ramping up to 200mg/day, can't say if that was down too the first 3 weeks of Venetoclax or the first 4 doses of Obinutuzumab. By cycle 6 blood tests and a CT scan showed me to be in unconfirmed complete remission pending the bone marrow biopsy results next month after end of treatment.

My hospital's management of this protocol was poor with late admissions to the ward on each occasion. The first 3 doses of Obinutuzumab were a day late. The first 3 doses of Venetoclax were accelerated from 48 hours to 37 hours and 40 hours with twice as many blood tests than expected from V+O booklet. Although they opened the box to dispense the Venetoclax and must have seen the "take ... with a meal" label in the box lid they never proffered a meal. Outpatient blood tests took over 2 hours to get a result, on the 100mg and 200mg ramp up it was 10 hours after taking the tablets, which doesn't really meet the 6-8 hours "real time blood tests".

[Newdawn Administrator in reply to Skyshark]

Skyshark, this post is now over 2 yrs old so it could be the information collating stage is now past.

Newdawn

[Skyshark in reply to Newdawn]

J'ai accuse Pat aka Bagelstreet225!