Any experiences with Venetoclax?

[JuJubee4life]

I'm 58 YOA female and I have high risk CLL. I have been on Imbrutinib for over 9 years and it's starting to fail. Currently stable with WBC 70-80k. Doctors want to switch me over to Venetoclax and I was wondering if anyone has any experience with it.

[Classicaljazz]

I completed a year of venetoclax 11 months ago, with 6 months of obinutuzumab starting a month prior to the venetoclax. For me there were fewer side effects than when I had tried acalabrutinib where I had headaches for more than a month, quite a bit of bruising , increased BP, and some cardiac arrhythmias. Side effects were nausea if I didn't eat something right before taking venetoclax, and some minor diarrhea, especially for the first few weeks, that would go away with a dose of Imodium. It is great that it is time-limited and hopefully most of us will have long remissions with it.

[Skyshark in reply to Classicaljazz]

You should have been eating a "meal", between a quarter and one third of your daily calorie intake. At a minimum, breakfast cereal, milk, two toast with butter and jam etc.

That ensures adequate uptake of the drug and slows it's passage down. Taking the tablets without food on an empty stomach is about one third of correct dose.

pubmed.ncbi.nlm.nih.gov/270...

Some people prefer to take it with an evening meal.

Venetoclax uptake with food

[jacjar1]

Tons of posts for Venetoclax. if you search you should find plenty of responses. Im on it now ,started 10 months ago. Worst side effect for me has been constipation.

[AussieNeil Administrator]

Thanks for sharing that ibrutinib has kept your CLL under control for nine years, even with high risk CLL. Switching to venetoclax is indeed the usual option in this case, though you may also be able to stay on a BTK inhibitor, providing it's one of the non-covalently bonding BTKs, by switching to a clinical trial. Pirtobrutinib is the closest to being approved and we do have some members taking it.

In addition to the couple of answers you've received, there are several previous posts on this topic that have shown up in the *Related posts", section, which you'll find either to the right or below your post. I suspect that most members with experience of switching to venetoclax may not be prepared to share on an open/unlocked post healthunlocked.com/cllsuppo...

I expect that you are aware of the risk of tumour flare if you stop taking ibrutinib and don't immediately switch to another means of keeping your CLL under control? I suspect this could still happen with high risk CLL, even after 9 years on ibrutinib, particularly if you are seeing signs that ibrutinib is beginning to fail and still have a reasonably high, but stable lymphocyte/WBC count. As a matter of interest, what were your highest and lowest WBC results and when in your nine years of CLL management with ibrutinib did they occur?

Thanks,

Neil

[Hilo13]

I’m just starting cycle 10 of 12 cycles after having obintuzamab for six months . My latest CT scan was very encouraging and apart from minor gastric issues and nausea for an hour after taking it I’m feeling much better . Numbers are really good looking forward to finishing in September. Good luck Chris

[CoachVera55]

Its so great to have options. So wow 9yrs on Ibrutinib with High Risk CLL, that’s a good run. I have a mild/moderate risk CLL, 13yrs 8mos no treatment & now on Acalabrutinib 1/2 dose for 1 month. I did 13 days on Zanubrutinib but the side effects were too much. I will move to full dose on Monday with my new Onc appt 1 week away.

How were your numbers b4 treatment, averaged for the longterm & then what preceeded the failing part because many have a hard time even tolerating the first BTKI ?

I really pushed my body even after my job related injuries; Bilateral Total Knee Replacements, Malunioned Fractured Left Hip, Bilateral Torn Rotator Cuffs with only Right Shoulder Artroscopy, Cervical Lumbar Radiculopathy & Sciatica from Hell. Now I have arch/ankle issues even with what I pay for cute orthopedic shoes. 🤦🏽‍♀️ With all that I worked out 60-90 min 5/6 days per week & that really helped me mentally & physically. But with both drugs I feel serious muscle fatigue like I already worked out each day. Only doing the Vibration Plate 3X per week for 15min just for toning. I went from 340lbs ->250lbs, Plantbased Organic, RAW & Juicing. I just pray to return to at least 30min per day & teaching 1 fitness class per week in my Homegym.

[SofiaDeo]

If you lock your post you may get more responses, right now your question is open to the entire Internet, not restricted to this community only.

[GumboKing]

I had a similar problem with Imbruvica. I added V and was uMRD is a year. Unfortunately, that lasted only 1 1/2 years and I am wondering what's next. I too am high risk.

Best of luck!

Paul

[DanBro1]

It's called Venclexta here in the US. I was under the impression that Venclexta was prescribed simultaneously with an Obinutuzumab regimen and not stand alone, but I am not a doc, so what do I know. O+V has really worked well for me. I've been uMRD for 16 months.

[SofiaDeo in reply to DanBro1]

Venclexta can be prescribed standalone. A major drawback is higher risk for resistance, selecting for resistant clones. I did venetoclax monotherapy but I already have a high risk clone complex karyotype. My specialist preferred V&O, but I made a case for why O was not a good choice for me at that time. I don't worry about getting del17p or a TP53 mutation from treatment because I already have them. I *did* do a time limited treatment, to avoid my variant becoming resistant. I am hoping for at least a 2 year remission, if so I can consider simply re-treating. As opposed to extended treatment on venetoclax, I went uMRD within a year, so, this plan may be feasible. People who take longer to read uMRD may not be able to simply repeat if they relapse quickly.

[Gisygirl]

I was switched to Venclexta in 2021 after having been on Imbruvica for 7 years. I was first put on 2 IV doses of obinutuzumab which zapped all of my white cells and put me in the hospital in septic shock. They were able to make my body replace white cells to a healthy level, after which I had swollen lymph nodes...so no more of the IV medicine. It took my body some months to acclimate to the Venclexta but now all is well as far as my monthly blood work numbers go.

[CoachVera55 in reply to Gisygirl]

Wow if I am honest, I don’t want to go into the hospital. Whatever I can do from home I will try first. Yes because I do have an apprehension to our medical community, the risk of nosocomial infections & just no desire of spending what time I do have there!!! I understand that we don’t know until we try but can we just start low dose & see🤷🏽‍♀️ I repeatedly do not do well with medication at the standard dose. When I did pain management, they had a hard time raising my heartrate & blood pressure after anesthesia so I demanded 1/2 dose & it worked way better. I just pray my new doctors listen because I do know myself better than anyone else & its based on my history & not my hysteria🤦🏽‍♀️

[Skyshark in reply to CoachVera55]

With a WBC 70-80 you are at least medium risk for TLS as your lymphs will be 65-75. I suspect that is high enough for the "consultants decision" to be admission. If you have swollen lymph glands >5cm (2in) you are high risk and hospital is a given.

The more water you can drink the lower the risk as you flush the products of cell lysis out quicker. For high risk I believe the target intake should be 3L a day and not the 1.5-2L that Abbvie suggest.

[Cllsller]

After many treatments for CLL and SLL, I started Venclexta a few months ago. So far so good. Unlike Imbruvica and Acalabrutinib, I have very few side effects and am very pleased with this drug. Hardest part is drinking a lot of water! I wish you the best.

[rafew]

I was on V+R following several failed chemo treatments, The ramp-up was a little rough and due to some TLS and high potassium levels, I was in the hospital for 3-4 days the first 5 weeks of the treatment as the dose increased. Following that, the side effects were minimal, some digestive issues - but nothing that couldn't be resolved with over-the-counter meds. At 18 months, I was MRD-, and treatments was stopped. Unfortunately, my remission was short and at 9 months my labs showed progression and a couple of months later I started treatment with Acalabrutinub. Best wishes.

[SofiaDeo in reply to rafew]

You actually got the TLS diagnosis? It's usually a "yes or no" type thing, I have never heard a doctor talk about a patient having "some TLS". I have heard there are different gradings , levels 0-4. And that actually getting the diagnosis is fairly serious.

ncbi.nlm.nih.gov/books/NBK5...

[rafew in reply to SofiaDeo]

Yes, I was in-patient for the ramp-up, It was caught and treated very quickly as it can be quite serious.