VENETOCLAX

[Gogldn]

Just wondered how many of you about there are on VENETOCLAX? My husband was started on this med and was ramped up just before the increase to 200mg when he had Tumor Lysis. Was hospitalized and all labs came drastically down and into almost normal levels. He feels much better as was extremely fatigued before the crisis. The doctor was very pleased and is now keeping him on just 100mg of VENETOCLAX. So far so good tho it has only been a few days out of the hospital. He did have a blood transfusion while in the hospital and is checked every few dys to see if he needs more. Btw he had some side effects of Imbruvica so that is why the VENETOCLAX

[Hidden]

i am.

[Ellieoak]

Dear Gogldn, I've been on Venteaclax for 1 yr 3mo. now. I never received tumor lysis because I feel I drank so much water. You have to drink when on Venteclax. Anna

[Hidden in reply to Ellieoak]

Ellieoak-has it cleared your bone marrow.?

[Ellieoak in reply to Hidden]

Don’t know yet, I see my oncologist on Tuesday Feb 11. I will probably find out soon after that.

[PlanetaryKim]

Good luck to your husband, Gogldn. I hope the rest of his experience goes well with this drug. I just started Venetoclax a couple of days ago.

[tozer]

I have been on Ibrutinib and Venetoclax for almost 3 years and with minimal side effects (some joint pain - which could be as a result of ibrutinib and occasional diarrhea). I would echo earlier comments about keep on drinking a lot of water. These drugs do place a pressure on the liver and kidneys. Good luck with the treatment. It has been a life saver for me here in Australia

[Nicebaps]

Hi Gogldn

I've been on 400mg for the past two and a half years. The only problems that I have is being permently neutropenic. Top tip is for your husband to drink plenty of fluids about 2 LTRs+ a day. This will reduce him getting TLS again. Good luck.

[Doggoneit101]

I am on Venteclax as well. I drink tons of water everyday. I'm sorry to hear about your husband. I have not had any problems yet ( knock on wood). Sounds like he had a rough ramp up. I took Allpurinal during my ramp up.

[2016miniman]

Sorry to hear of his challenges with both meds. I had some horrendous side effects from Imbrutinib including bouts of afib and a ruptured spleen so I only lasted 7 weeks on that med. Now on Venteclax which has given me side effects as well but not as bad Imbrutinib. It has all but eliminated my cancer cells and greatly helped my rbc and hemoglobin level which was great! But at the same time it greatly lowered my wbc count to the point It’s so low that I had essentially no effective immune system. It’s ow starting to rise again but very slowly. As I learned this isn’t an unusual thing to happen but everyone is different so he may very well not have this issue. This med is way more tolerable than Imbrutinib in my opinion. Wishing all the best to him in his CLL journey.

[barihite]

I was on Ibrutnib until I had bad side effects. Went to Venetoclax. Lowered my WBC the first day, to almost normal. I've ramped up to 200, but am now down to 100 because of various factors. My numbers are perfect. I am a small female, so I was not going to go all the way to 400 anyway, and am thrilled with 100. On since November 2018.

[Smakwater]

Gogldn,

I had 15 months O + V. The treatment started with 2 1/2 months obinutuzumab, and then venetoclax was added in a low dose ramp up from 50 mg to 400mg over aprox 6 week period. At 6 months the obinutuzumab was discontinued and I stayed on 400mg daily venetoclax. It was at the 6 month period I developed mild neutropenia which persisted intermittently up until I discontinued treatment at 15 months. At this time I am slightly within acceptable range on the neutrophils with an ANC of 1.8.

I had a bone marrow biopsy at 11 months which observed no CLL present at a measure of 10^6th.

JM

[roszika]

I have been on Veneteclax since April 2019. Some minor side effects . yes drink lots of water

[MRian]

hi,

I wish you strength and good luck to your husband!

I have been taking Venetoclax for 4 years now and my results are good. Two chemotherapies didn't help, my life was in danger. I live and work now, my family and I are very happy, hoping for more.

[studebaker in reply to MRian]

Are you in a trial? How long will you be on Venetoclax?

I thought that there was a set time to be on Venetoclax and it might get you into uMRD and you can stop treatment and have a very long remission.

Dana

[nozha13]

I've been on venetoclax for 7 months and had a couple of kidney function tests at the beginning that were below normal. I now drink a minimum of 2.5 litres of water every day and have had no problems since doing that. Very important to hydrate well.

[Hermance]

I am on Venetoclax since last September and very happy with it, after a rough start. In April 2021, I had the Covid vaccine a day before starting this new drug. When the ramp-up reached 200mg I ended up in the ER losing all my red cells. Had 20 transfusions in the next 2 weeks. After things calmed down, and I was off cortisone, we re-started the treatment, and my dose now is 50 mg. Yes, 50 mg!! Twice we had to suspend the treatment because my white cells were going too low. So, I have very regular check-ups, and I feel fine.