treatment progression

[Givemestrength23]

has anyone else been on ibrutinib and Ventoclax and can tell me what to expect

[SofiaDeo]

Hi, welcome! Please check out the Pinned Posts section, and especially the "how to navigate this site" part. You can do a Search of ibrutinib and venetoclax, and discover many, many posts discussing these drugs.

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The combination of ibrutinib plus venetoclax is somewhat new, so there won't be a huge number of people on both right now. But there is information on each drug separately.

[Skyshark]

Please read any booklet(s) that your CNS has given you. As Ibrutinib + Venetoclax was only approved for NHS at end of May this may be lacking in print quality. You should also have a "Rapid Response" alert card for neutropenic sepsis and a "Patient Card" for Safety Information about Venclyxto.

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

During 5 week Venetoclax ramp-up you will have 4 appointments a week for first 2 weeks on Venetoclax, prior blood test (Monday), consultation (Tuesday), early afternoon blood test 6-8hr after taking first dose of 20mg or 50mg in the morning (Wednesday) and a 24 hr blood test the next morning (Thursday) before taking the 2nd dose. Weeks 3 to 5 are a prior blood test and consultation to prescribe the next increase in dose. For "high risk TLS" there are additional blood tests in hospital (3 days, 2 nights each week) on first dose days of first 2 weeks and the last 3 weeks are 4 days a week. Starting Ibrutinib 3 cycles (12 weeks) before Venetoclax reduces the number patients that are "high risk" from 22% to 2%, any lumps and bumps of swollen lymph glands should just melt away. If you start as "high risk" there will be a CT scan a week or two before starting Venetoclax to confirm that you are no longer "high risk".

nssg.oxford-haematology.org...

There are alternative doses of Aciclovir and Co-trimoxazole, eg Aciclovir 400mg twice a day, 80/400mg Co-trimoxazole daily.

The definition of "meal" that Venetoclax should be taken with or after is 512 Kcal "low fat" to ~750 kcal "high fat". Taking it on an empty stomach results in a reduction in uptake to one third of normal. If taking them in hospital don't be shy to ask for a sandwich and packet of biscuits.

Allopurinol for uric acid and TLS, you should drink 2L to 3L a day while taking this to avoid a nasty burning rash. This requirement is not in the patient information leaflet and only on a NHS web page for the drug. This intake of water is somewhat greater than the 1.5L to 2L that Abbvie recommend for Venetoclax dose increases during ramp up.

nhs.uk/medicines/allopurino...

PIL for Venetoclax

medicines.org.uk/emc/files/...

I have no experience of Ibrutinib but I recommend it for it's ability to reduce the likely-hood of a "high risk TLS" ramp-up of Venetoclax. PIL for Ibrutinib.

medicines.org.uk/emc/files/...

They both have a daunting list of possible side effects. Never mind, so do all the other drugs that they will give you but if you experience any you should contact the nursing team. Many people sail though the whole treatment. Here's hoping you aren't one of the awkward ones.

You should ask for MRD testing at end of treatment.

[Oleboyredw-uk]

I was on Ibrutinib (15 months) and Venetoclax (14 months) starting in 2017. I found it very tolerable with little side effects. The only thing I specifically remember was my nails becoming a little brittle, which I think is a known side effect of Ibritinib.

The reason for different elapses was that I was started on Ibrutinib first then the Venetoclax was added. I stopped taking them both once I hit the target for MRD negative and lymph node sizes, which was the plan for the trial I was on at the time. The MRD negative was detected in a BMB at about 12 months but I had one psky node that was about 0.2cm larger than the team wanted it, three months later it was well under the target size and back to 'normaL'

Please note this was on the Clarity trial, testing I+V for relapsed/refractory patients.

Best to all, robin

[Jcook113]

Hi i have had 6 months of the chemo and was fine Felt a little tired few days after I’m still on Ventoclax I have been on them for 8 months and finish them in February which will of been a year I take them on a lunch time with food and feel nauseous a few hours later so I take my anti sickness . I often feel tired later in the day and need a nap . I work in a hospital so I’ll be off work until I finish my treatment with my immune system been low good luck hope this helps

[Fleur1-]

Hi, I started this regime in June, I was really not looking forward to it after reading the lengthy and concerning side effects of each, I’ve not encountered any side effects in terms of how I feel or capability to carry on as normal, work, life, energy etc, in fact I feel great, the only issue that has presented itself so far is that my immunity has taken a dip meaning that Venetoclax treatment is suspended periodically whilst it rises again, so go with an open mind as everyone is different, good luck wishing issue free regime 🙂

[ViPOR]

I was on Ibrutinib as a clinical trial for my FNHL for 15 months…for me, I had a lot of bad leg and feet cramping. I was on it again in Summer 2020 as part of a phase 2 VIPOR immune therapy trial after my CAR T failed . The VIPOR included ( Venetoclax, Ibrutinib, prednisone, Obintuzimab and Revmilid ( Lenolidimide). But this time my Ibrutinib dose was smaller and my cramps were not bad at all. But since so many immune therapy meds, it is hard to determine what med caused what…but it did put me into a present 3 year CR- best wishes for your Health!