Experiences with

Venetoclax

Well it's been 15 days since I started IB on the clinical trial with Venetoclax . I have had several minor side effects so far that are worth mentioning. I have experienced.. Occasionall headaches.. Muscle cramps.. Bone pain..in knees.. Hands... And a rash just appeared on my back and chest.

Dr. will do a PET Scan in a couple months to check on those pesky lymph nodes, but he said I'm having a great response to Venetoclax! On the road to remission and hoping it lasts longer than previous treatments, but whatever time I get from it, I'm grateful!

Hello I am on a combination trial of Imbruvica plus Venetoclax. Overall I am doing well but I have had acid reflux's a bit lately. I know bloating is one of the possible side effects of Venetoclax. I have had it a bit in the past as well so it may not be related to the drugs either.

I started my first round today on IB. It's been 2 years since I was diagnosed with CLL. I have been on W&W up until now. At first I refused treatment and tried the natural path but I soon realized that although I was keeping my CLL in check I wouldn't be able to maintain this forever. I also received

We have published a news article and summary for you here: - http://www.leukaemiacare.org.uk/news/nice-approves-venetoclax-for-treating-chronic-lymphocytic-leukaemia-patients In Brief NICE recommendations 1.1 Venetoclax is recommended for use within the Cancer Drugs Fund, within its marketing

Anyone else dealing with fatigue from Venetoclax? Renee

Her recovery was perhaps slower than most on Venetoclax however she was incredibly unwell when she started. It is truly amazing and we are incredibly grateful that she has recovered so well.

Hello, I am please to announce that after my 9th cycle on the Imbruvica plus Venetoclax trial I am Min Residual Disease (MRD) Negative in the blood and Compete Response CR on the MRI. I hope it continues... I am very pleased given I am 17P deleted. My nodes were very big when I started.

Hi, I have been little too busy and way too sick with a slowly resolving chest infection to stay well engaged with the list, but I have been posting almost twice a week on our website in honor of Blood Cancer Awareness Month (#BCAM) and World Lymphoma Awareness Day (#WLAD). I am trying to rest but

Hi Everyone started Venetoclax last Thursday and on Sunday got bit by something and as usual I have a bad reaction. Swollen foot and .3 big blisters the size of quarters filled with fluid. One blister is still large and filled and won't drain.

Here is the CLL journey of my father: October 2015- Dx with mild CLL (watch and wait) February 2016- started FCR due to B symptoms (8 cycles) September 2016- PR November 2016- CLL back and trial with Venetoclax April 2017- Leg lymph node growing and Zydelig June 2017- PCP caused by Zydelig July 2017

Started Ibrutinib 3 months ago on the Ibrutinib/Venetoclax Trial. No side effects until start of week 8...diarrhoea. Didn't bother me at first as only once a day at my "usual time".

- Very specific exclusion criteria which include: Date of CLL/SLL diagnosis ≥ 24 months prior to registration Prior exposure to ibrutinib or to a BCR inhibitor (eg Btk or PI3 kinase or Syk inhibitors) or a BCL-2 inhibitor (eg venetoclax) Known central nervous system (CNS) lymphoma or leukemia -

When 100mg day 6, The doctor discussed with my hubby and hope to stop Venetoclax due to the high risk of high Lactic Acid and to use another chemotherapy. My hubby did not want to give up because the medicine worked but slowly. Our doctor is superb, we really really appreciate his new solution.

Have now completed 10 months of the Ibrutinib Venetoclax trial and my white count is now 4.3.On the whole have been ok apart from an onward going problem with cystitis. Wondered if there was anyone else on the same trial and how they were doing.

My dad is in the week two with Venetoclax and he feels a falling sensation in the chest which appears now and then without any clear pattern. I wonder if anyone experienced something similar. The doctors says it can be anhelation, but it does not quite feel that way.

Looking forward to the related sharing and hope to get enouragement to continue Venetoclax Journey. Thanks.

Also considering clinical trials with ibrutinib+obintuzumab+venetoclax as one arm and second arm is ibrutinib+obintuzumab. Max time on these drugs is 2 years. Any comments as to choosing one over the other.

Has anybody in UK tried to get travel insurance while in Ibrutinib and/or Venetoclax? Same question also for anyone who has in a trial? In my most recent visit for a checkup the doctor (when asked) told me they were OK with me travelling again within Europe given my current blood results.

He could not afford Ibrutinib but got enrolled into a 2-year Venetoclax trial. Meanwhile, we are seeking opportunities to get Ibrutinib which is less expensive than Venetoclax. Hopefully, by the end of this 2-year period, he could get it.