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CLL Support Association
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Venetoclax

Has anyone out there tried Venetoclax? Any insights or advice? My Oncologist said it can be a little dicey the first 4-6 weeks as compels the release of toxins in my body. Any truth?

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I've had all 3 of the newest non chemo treatments, Venetoclax was the most powerful and for me, had the least side effects. The first 5 weeks- ramp up from 20 mg/day to 400mg/day require close supervision by a medical team with lots of experience with the drug.

If you look for the box labeled "Related Posts" (top right column on computer screens, way below on mobile devices) you can see some of the over 1100 previous discussions about Venetoclax

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Here is a link to the 1116 prior discussions: healthunlocked.com/search/v...

Len

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Venetoclax causes a rapid cell die off, so tumor lysis syndrome is the primary concern in the first month or so.

For this reason you start at a low dose and then it steps up... over 5 weeks.

Here is the venetoclax website with lots of information

venclexta.com/

~chris

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This sounds scary! I learned in nursing school that there is no such thing as a safe drug not even an aspirin

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I have been on Venetoclax for six months without any side effects. As already mentioned, tumour lysis is the most concerning risk due to the cells dying off very quickly which could overwhelm the kidneys. But with careful monitoring probably in hospital for 2 or 3 days in the week for 4 or 5 weeks, the ramping up of the dosage should go well and without problems. After the first five weeks in my case, my WCC came down from 230 to 67 and is now 4. It's a marvellous drug.

All the best.

David. (in the UK)

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did you have to spend time in the hospital?

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Hi Haileybury, may I ask if you had chemo as well or just the venetoclax? Did your wcc only move after the 5th week or was there a gradual decrease? My Dad has just started his first week.

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I had FCR chemo early in 2014. It was withdrawn after 2 cycles as it wrecked my bone marrow. Some months later, I was put on Ibrutinib and took that for 21 months with good effect. However, that was stopped as it was thought to be the cause of kidney problems. After 6 months , I relapsed and my WBC rose to 260. I was fortunate to be allowed Venetoclax which was started in September 2017.

I had to be monitored very closely because of my risk of Tumour Lysis Syndrome for the 5 week ramping up to the full dose. I was not on chemo at this stage. The WBC reduced quickly after the first dose and each subsequent week it got lower until I got on to the full dose in week 5 and my WBC became in normal range by that time. Venetoclax works very quickly and has been a saviour for me. I have my life back to normal (for a 79 year old). I have had NO side effects. I have been on Venetoclax now for 12 months. I am smiling. Good luck to your father.

David.

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Hi Haileybury, thank you so much for your reply, that’s really helpful. Thanks also for your well wishes. Wishing you continued success also with the treatment.

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My husband has been on it for 3 months. For the first 3 weeks he went to the Cancer Center for the dose to be increased and had Iv's. He never had to stay in hospital only a few hours at the Cancer Center and blood check before he could leave. You have to drink at least 56 ounces a day, He drank 4, 16.9 ounces . it was was tuff , but he did it. He has been doing good with no side effects. His blood work does not show any leukemia! He goes now every 8 weeks for an IVIG and a check up. His only problem is fatigue, but he was that before he started taking Venclexta.

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My husband started Venetoclax three months ago after failing Ibrutinib and Zydelig and it was a difficult start. We expected his hospital stay would be 3 days or so just for observation (because he had no side effects to speak of with the other drugs.) Ended up being 10 days and he felt pretty bad. Drenching night sweats, no energy. Low platelets, low hemoglobin, white count went from 80,000 to 2,000. All this because it was getting the bad stuff,which is good! I don't say any of this to discourage you but just so you can be prepared for how much time you might need away from any other responsibilities.

After discharge he was pretty much in bed for another week or two and then, able to work a little bit. It just took about a month to build back up again, but now he feels better blood work is normal. He doesn't seem to experience any side effects now.

In the hospital, they drew blood every 4 hours. He didn't get a pic line, because we didn't expect to be there that long, but sure wishes he had. Being stuck over 60 times is not fun. And he had to go back 4-5 times a week after that for blood draw for the next few weeks, then down to 1-2 a week. We both had to be germaphobes for awhile as his neutrophils were pretty low - avoided people & public spaces as much as possible, wear masks if in public, etc.

Also, between the blood draws and the other people coming in and out, it was hard for him to get any decent, uninterrupted sleep in the hospital. I finally realized I had to protect him by insisting that no one come in between blood draws at night, and to get his vitals, or whatever at same time as blood draw. The nurse, lab, techs, all seem to work independently of each other and I found it was up to me to coordinate in order to avoid unnecessary interruptions. Otherwise it was like grand central station. This was at a major university research hospital/cancer center.

Other people seem to have an easier start, and I hope you do too. Plan on the possibility of a month or so to get back up to speed, and hopefully it will be much less!

Wishing you wellness,

Peggy

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thank you Peggy - this is really helpful!

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Hi my partner has been on venetoclax (or abt199 as we still call it) for just short of 4 years. You can read our journey on here but basically when starting the drug it is critical that you remain hydrated and drink lots. Your clinicians will probably monitor this when you start and as you increase doses from 20mg to 400mg. My partner was very ill when he started, but tolerated venetoclax very well, had no major problems, low neutrophils for a few months but has had no problems ssince that was sorted. For him this drug has given him back his life.

All the best to you

Immie

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thanks Immie!

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I started Venetoclax after 3 months of Ibrutinib. I had to go into the hospital for 3-4 days each week so they could watch for tumor lysis which is the most concern at first. Plus they want you to have plenty of fluids to protect your kidneys. And yes they do draw blood every 4 hours and I didn't have a pic line either and all that poking got old. But after the first 3 weeks I didn't have to go into the hospital for the last 2 ramp ups. My blood counts are now mostly normal. Good luck and best wishes.

Paula

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Been on Venetoclax for over 10 months now. Fantastic drug. Has to monitored as you ramp up to therapeutic dosage in the first 4 weeks. I dropped from 150k ALC to NORM in 5 weeks...and now all blood work is back within norm. No side effects except for mild diarrhoea...

Much better than Ibrutinib...with hope for MRD...

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thanks - good to know. Did you end up in the hospital? I also had no luck with Ibrutinib.

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During the initial dose ramping stage, I was an inpatient for 2 days each week for 4 weeks with 6 or 7 blood tests over the 2 days. No side effects at all. Feeling really well at last.

David

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I was on Venetoclax for nearly 14 months as part of a trial. I only stopped as we’d hit the success target for the trial at that point so now in 12 months of monitoring without drugs.

In the five week ramp up period (20, 50, 100, 200 then 400mg) I was monitored closely. I was categorised as high risk of TLS so for the first two ramp ups I spend one night each in hospital. For the final three I did not stay but had to return for a blood test at eight and 24 hours after taking Venetoclax.

Other than very carefully measuring fluids in and out for the two overnights nothing significant. Due to my TLS risk as well as the copious cups of tea and glasses of water they gave me five litres of saline on a drip, the first in an hour with obvious consequences. I think the TLS risk is very well understood now so you should not be alarmed by the precautions the hospital will put in place.

No obvious side effects from Venetoclax.

best, rob

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I wish they would do something about these serious side effects. Fix one thing damage another i don't get it😕

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