Due to start on Ventoclax

[Guinness4822]

Hi All, 3 months since first treatment of Ibrutinib and due to have 1st Venetoclax dose next week. Did anyone have any side effects with this combination. I have been asked to visit hospital weekly once I start this next cycle. I will still be on Ibrutinib as well.Thanks.

[Ellieoak]

I had side effects from ibrutinib but none from venteoclax. I took both drugs separately not together.

[Guinness4822 in reply to Ellieoak]

Thanks for reply.

[Newdawn Administrator]

I was on this combination (clinical trial in the U.K.). I was fortunate not to suffer side effects from the introduction of Venetoclax but some have nausea as it’s ramped up each week.

My advice would be plenty of water. Hydration is essential with Venetoclax. I spent 3 of the 5 ramp up periods as an in-patient due to depleted phosphate levels. I wasn’t at risk of TLS as Ibrutinib had nicely brought down my lymphocyte levels but you’ll find you’ll have masses of blood tests. I probably had more due to being on a trial.

The biggest issue I found was hours and hours sat around in the day unit waiting between ingesting the Venetoclax and then waiting for blood results. I had up to 10 hrs at a time and they wouldn’t let me go home in-between. Hopefully they have a better system for you. I was a bit of a guinea-pig as V was new to the unit.

It’s a very effective treatment but I can’t stress the need to keep up the water levels.

Best wishes,

Newdawn

[Guinness4822 in reply to Newdawn]

Thanks I will definitely take your advice.

[Searchlight]

Hi, I had this treatment just over four years ago and was amazed never to have one significant side-effect (little changes I reported could have occurred for any reason).

I didn’t have a single sick day throughout the two years on I and V, and after six months on the I and V regimen, I received an MRD Negative result. That means, I’ve now been MRD Negative for 4 1/2 years and counting. It’s truly miraculous. I stopped the treatment in 2020, and potentially didn’t even need it that long.

Partial results from the FLAIR Trial I’m still on (you sign up for six years) have now been published. It’s amazing news. You’ll find the Venetoclax info in ‘Second Results’, further down the page: cllsupport.org.uk/first-res...

Thinking of you. I’m confident everything will be fine

[Guinness4822 in reply to Searchlight]

Thanks so much I hope I have the same results.

[Searchlight in reply to Guinness4822]

So do I. 🙏🏼🙂

[Guinness4822 in reply to Searchlight]

Thanks.

[larrymarion in reply to Searchlight]

wow, that's a great outcome, at least to date. Could you share your diagnosis? Specifically, which markers? and was the I+V your first treatment?

[Skyshark in reply to Searchlight]

What are your IgHV and TP53/17p markers?

[wakewatcher]

I’m on the same combination and just started week 5 escalation. Felt very sick on week 4 and was given cyclazine which worked but makes you very dozy. This week I’ve had ondansetron and that’s been brilliant, very laid back non nauseous feeling but with downside of constipation. Drinking loads of water, at least 2 litres a day, helps me tolerate it. I’ve found fizzy water very helpful as it seems to settle my stomach too. Good luck, hope it goes well. I felt good enough to go out on my e-bike today, yay.

[Guinness4822 in reply to wakewatcher]

Thanks for your reply.

[Alshial]

In Uk - yes on both. I am on Venetoclax ramp up (currently on 200mg) and holding whilst they confirm my liver can cope with 400mg. When I first started on Venetoclax some weeks back, I was inpatient for two days whilst they administer and blood test to confirm no TLS. Week later, inpatient for two days again for ramp up and TLS check. Since then weekly blood tests with incremental dose increase. Only side effect from Ibutrinib noted is I am easily bruised, and early on red spots on legs (now gone). Since starting Venetoclax, perhaps I have more heartburn than normal, otherwise feeling fine.

[Guinness4822 in reply to Alshial]

Thanks for reply 🙂

[Big_Dee]

Hello Guinness4822

When I started with Venetoclax, I had some vomiting, diarrhea and nausea about once or twice a week. I just finished my one year of Venetoclax with vomiting, diarrhea and nausea about every other day, but I made it. It just made traveling a real challenge. 😁Blessings.

[Guinness4822 in reply to Big_Dee]

Thanks for reply. 😀

[angelikab]

I had very very swollen legs and could barely walk. So I’m on 100mg a day and that’s fine. Some nausea but taking it in the evening really helps. Wishing you the best.

[Guinness4822 in reply to angelikab]

Thanks not sure what dose I'll get started on.

[angelikab]

Normally you start at 100 mg up to 400 mg daily.

[Skyshark in reply to angelikab]

You start on 20mg a week. Then 50mg again for a week. If high risk TLS or medium risk with poor creatinine clearance requiring IV of Rasburicase you will be an inpatient. That also means a lot more blood tests, 5 a week instead of 3.

Then 3 more weeks as it ramps up through 100mg, 200mg and finally full 400mg dose. High risk TLS have 3 blood tests a week, while low/med risk have one.

Starting on high doses Venetoclax is only a possibility when transitioning from one treatment (BTKi) to Venetoclax with very low lymphs and other indicators of TLS risk. There are number of studies for this that are called "RDE" rapid dose escalation.

[Guinness4822]

Thanks.

[IRN83]

I've had V & O (O is also known as Gazyva) twice [two different seasons]. On the first treatment with V, I didn't have an issue specifically, but my body couldn't handle the full 400mg/day and landed me in the hospital for 2 weeks. The DRs decreased the dosage to 100mg/day and I was fine. I did have some minor issues with the Gazyva both times, nothing that wasn't handled in real time.

I had Ibrutinib previously, but had a severe reaction to it and spent several weeks in the hospital, and 3 months out of work.

The 2nd time with V&O, the V didn't work and it greatly decreased my WBC, platelets, and ANC. This resulted in a weakened immunity and I spent 12 days in the hospital with pneumonia and RSV. My Dr had me stop the V treatment. I'm now waiting to try something different. Over the last 12 years, I've been treated 5 times, with 4 different drugs. I'm now waiting to start my 6th treatment and 5th drug.

I hope and pray V works superbly for you.

[Guinness4822 in reply to IRN83]

Thanks and and hope you fond a treatment that is not so invasive for you.

[Skyshark]

For Venetoclax ramp up in UK you wouldn't want to be without your little TLS patient warning card.

medicines.org.uk/emc/rmm/22...

As mandated by the gov, because the NHS have made some bad mistakes.

gov.uk/drug-safety-update/v...

For all patients, it is important to strictly adhere to the dose-titration schedule and to the measures to minimise the risk of TLS as outlined in the updated Summary of Product Characteristics (SmPC)

VI the first three cycles of I will reduce the risk of TLS. Typically about 20% of people are at high risk TLS, after the initial I this reduces to 2%. The number at medium risk stays about the same.

I got the first 3 doses of 20mg in 37 hours and 50mg in 41 hours. Dose titration schedule? What's that? And without the protection of a little TLS patient warning card (but did get 5 extra day 2 blood tests each time). A 6 day week, later when on 400mg, is better than that.

I'm at cycle 9 of V+O and haven't had problems with V at all but slight constipation with Bristol poo chart No1 and No2. Type 6 and 7 have to be sampled by a nurse if performed in hospital.

By Cabot Health, Bristol Stool Chart - cdn.intechopen.com/pdfs-wm/..., CC BY-SA 3.0, commons.wikimedia.org/w/ind...

Bristol stool (poo) chart

[Guinness4822 in reply to Skyshark]

Thanks for advice.

[Smiley60]

Hi, this is really heartening to read as I seem to be on a similar journey to you! I complete the first 3 months of Ibrutinib next week, then will introduce Venetoclax starting with 20mg dose the following week. I’m really unsure what I might expect in terms of side effects from Venetoclax, however reading some of the messages here have really helped me to prepare, especially keeping hydrated.

[Guinness4822 in reply to Smiley60]

Hi Smiley looks like timing is exactly same as me. We will have to compare notes. 😃😃

[Smiley60 in reply to Guinness4822]

Hi, indeed we will! Do you know if there’s an option to have a private chat?

[AussieNeil Partner Administrator in reply to Smiley60]

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[Guinness4822 in reply to Smiley60]

If u press link Neil sent I think we can.