Hi everyone
I’ve just joined, I’m a 58 year old female
I’ve hade CLL for 20 years, and have had chemo
And radiation various times, I have been offered a trail on ventaclax. I must admit to being scared reading the side affects. I live in New Zealand
I would love to hear your views
Hi 581959,
After having chemo in 2011, I was on a trial with Venetoclax from August 2015 till September 2017 and had no side effects at all. See my post:
healthunlocked.com/cllsuppo...
From my point of view, Venetoclax is much preferable to chemo.
And the results of this study are very promising:
healthunlocked.com/cllsuppo...
Best wishes,
Korstiaan (The Netherlands)
Reading about Venetoclax people are doing very well on it - please let us know how you get on it
In the US I believe that it is only available for those with 17p deletion who have had prior treatment. I suspect the same is true in the UK. There are also clinical trials, and those will each have their own requirements.
In the US, Venetoclax can be used off label for any CLL patient. Not sure about other countries. For some the challenge may be getting insurance coverage. I was fortunate that my insurance covered Venetoclax for me front line for 13q deletion. I am not in a clinical trial.
Thanks... How wonderful that you were able to get insurance coverage. That is always foremost in my mind 
So happy that it is working for you.
I am not 17p deleted, but this is my 3rd round of treatment: FCR (failed), then Imbruvica (stopped due to skin issues) now Venetoclax. And yes my insurance is covering it. AND right now the manufacturer is having a special on it: $5.00 a month. Ask your doctor about it. I am not in a trial
Today i rec'd my starter kit... live in Hawaii and they have made this drug available to all cll geno types!!! I have CLL/SLL trisomal 12 w/ Chromosome 14q deletion. Best wishes to all
After 2.5 years on Imbruvica, I switched to Venclexta in Sept. 2017. I am very grateful to have had Imbruvica, but over time the side effects grew, and I needed to switch. It took a few months, but I believe my body has adjusted to Venclexta, and I am very happy. The only side effect I have encountered is a stomach issue, which I am managing. No more edema, no more nail, finger issues, lost weight ( I am sure water loss), and no more cramps.
I believe most do very well on this drug. Good luck with your decision.
I started Venetoclax front line, monotherapy, in December 2016. I have had no side effects at all. I am very close to MRD negative in the peripheral blood. CLL's were at 0.02% on my last flow cytometry.
Everyone is different in their response to treatment both in terms of side effects and efficacy. I wish you well with Venetoclax. It has been a miracle drug for me.
MelioraDay- did you get any mouth sores from the Venetoclax? If so how are you treating them
Thank you for you msg
Check with your doctor. The severity of the mouth sores can make a difference in preferred treatments. Many have posted that frequent rinsing with baking soda or baking soda and salt helps. If the sores are severe Magic Mouth Wash might be indicated for pain - formulas are a little different, basically lidocaine plus something else - seems to be called Magic Mouth Wash everywhere. There may be prescriptions specific to your sores, and you need to make sure you aren't doing anything to interfere with the Venetoclax.
I had no side effects whatsoever with Venetoclax . None. I just keep feeling better and better.
Hi and welcome to our community. I hope you find discussions and information here of use.
I’m on Ibrutinib and Venetoclax trial. Started a year ago tomorrow (will be your today). I feel is is going well.
best, rob
Good luck on that trial. The CLL doctors are talking that the future of CLL treatment is going to be combination therapies such as yours
Hi
I'm 56, male and from the UK. I've been on Venetoclax since Jul 17. The only problems I've had are to do with it's toxicity. This has caused a couple of things (1) an increase in my Bilirubin levels but then again mine has always be slightly higher than the norm. (2) and I can't think what the medical term is but, basically my Red Cells were being depleted due to the toxicity. Other than that I've been fine. The only tip I would give to anyone starting Venetoclax is to drink plenty of water/juice etc. The initial dose should be increased weekly and whilst this going on drink plenty ... lots and lots.
I wish you all the best and I'm sure you'll see positive results from Venetoclax.
Hi, I'm 78 year old male in the UK.. Diagnosed with CLL 4 years ago. Had FCR chemo that was stopped quickly. Went on to Ibrutinib for 21 months. That was stopped too for possible kidney damage. Have been on Venetoclax since last September and am doing really well. No side effects at all. Blood counts came down to normal levels very quickly and still are. I feel really well - the best I have felt for 4 years.
Good luck,
David.
Is veneticlax taken for the rest of your life, or is it stopped after a certain point?
Just a curious question; do you know what your white count was 20 years ago;
about that long ago I had a blood test for what I can't remember; but do remember the girls on the other side of the curtain saying out loud; "he has a high white count" actually that was more like 30 years ago. But Doctor never said anything about it and I didn't pay attention to it back then. In past 4 years or so diagnosed with CLL because of white count; then bone marrow biopsy. My insurance does not include MD Anderson; and finding a cancer specialist
or Hemotologist dealing specifically in CLL have not been able to find one. Was seeing Oncologist who told me to take Leukeran when white count was 40; went to another and she
(who seems to be in training) said do not take that drug; especially that high does; for my numbers that apparently are not bad enough for that. So I didn't take it and am back on "wait and see"
I don't know what my blood count was 20 years ago. I was real good about going annually for check up. Mine was caught 2013, just slightly elevated. He asked the usual questions: did I have a cold, infection, etc. No no no, OK we will check in 2 weeks. 2 weeks later no change. Ok I am sending you to hemetology, there they drew about 40 vials of blood.
Old Guy - you might want to start your own post (restricted to community only because you will be giving more personal information) giving your general location. Others may be able to recommend someone near you. It definitely sounds like you need a doctor more familiar with CLL. Leukeran might be the only choice for treatment in some countries, but that is not true in the US, and unless you have problems other than a WBC of 40, which would not trigger treatment for very many CLLers, you may do very well in watch and wait - a hard concept to wrap your head around, but the best approach if treatment isn't indicated.
Yes I understand about the watch and wait I have seen many comments on that. count was 40 when that doctor recommended Luca ran and I then changed to another oncologist I didn't take the Luca ran and now the white count is 64 and I'm still on Watch and wait
Hi,
I am an Australian female, 59 have known I have CLL for 18 years, probably had it for 22years. I have also had lots of treatment and am now on Venclexta. Have only reached 200mg 6 weeks in. Can you tell me how you have gone in the last 6 months and do you take the full 400mg. I also had Ibrutinib for a year a few years back. Thanks WW
My husband started on Venetoclax in January, his WBC went from 168K to 0 as of Wendsday. However his rbc also dropped causing him to need transfusions of rbc. Other then that he has not had any problems.
Good luck!
ScaredWife, this post is 2 yrs old so hopefully the poster has done well on Venetoclax over this period.
Hope it works out well for your husband.
Newdawn
I just noticed that, thank you.
Venclexta I’m new here 
Venetoclax, acalabrutnib, obitunzimab 
Venclexta Question
Venetoclax & fainting?
