It looks very likely I will switch from taking Ibrutinib to taking Venetoclax. While Venetoclax is a tablet, if I start it, apparently each week for the first 5 weeks, I will need to spend 48 hours in the hospital. This is to allow the medical staff to monitor my reaction to the Venetoclax.
Question is: for those people who started taking Venetoclax, did they have regular nights in the hospital during the first few weeks?
Thanks
I switched to Venetoclax after 9 months on Ibrutinib and never went into hospital. I had weekly blood tests and after they were checked by my consultant I was issued with the next week's tablets. I think it varies person to person. Good luck and I'm sure you'll find Venetoclax a great medication - I do.
Thanks for the quick and useful reply. It is likely I will switch to Venetolax due to concerns with my lungs. Could you kindly confirm why you switched medicines. Also, do you suffer from any tiredness or fatigue under Venetoclax.
I am in Edinburgh, Scotland.
Magnus
Ibrutinib was affecting my eyesight - I suffered two myopic shifts which resulted in deterioration of my sight. Since switching to Venetoclax it has returned to normal. I find that every couple of weeks I have a day when I am totally exhausted but so long as I rest then it passes and I can carry on as normal. Having a very lively 3 year old grandson probably contributes to this!!
Can you explain what happened to your eye sight?I feel I've lost sight but, just a difference in prescription though.
My sight changed rapidly - having always had great long distance sight I realised I couldn’t see the television clearly and certainly couldn’t read any sub-titles. Saw optician who said it was a huge myopic shift and prescribed glasses. During lockdown I found I was having problems again so saw optician as soon as we were allowed out and I’d had another myopic shift completely the other way! Very unusual apparently. So another two pairs of glasses. Then when I went onto Venetoclax my sight altered yet again. Back to optician and my sight has returned to what it was Ibrutinib resulting in two more pairs of glasses 😅 Apparently it is relatively rare but consultant sure it was caused by Ibrutinib and as it has been “cured” since stopping it then I am sure he is right.
Wow...so lucky it cleared. I'd lost vision soon after starting Ibrutinib. Within a month of a brand new prescription my glasses didn't feel right.I was reexamined and new lenses were made.My eye check up didn't reveal a medical issue though.
My doctor considered me high risk, so I was in the hospital for 30-36 hours on week 1 and 2.
Weeks 3 to 5 - I spent 8 hours near the hospital to get 3 blood tests and returned the next morning for one more.
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The important point is to have the blood drawn on a specific schedule and the tests interpreted promptly to detect any rise in minerals ( uric acid, potassium, phosphate, calcium) long before it threatens major organ shutdown. If that can be done reliably, then outpatient testing is allowed. There are few to no physical symptoms that can alert the patient in time to avoid life threatening situations.
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Here is the offical website on how they decide low, medium or high risk and then the ramp up options
venclextahcp.com/cll/dosing...
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Since you are in the UK, here is one of your top CLL Experts description- see the charts a few pages down.
onlinelibrary.wiley.com/doi...
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Len
Len,
Thanks for the information and the very useful websites.
Magnus
Yes, like hawkeagle, I was also considered low risk for tumour lysis syndrome because I’d been on Ibrutinib which had greatly reduced my lymphocyte levels. However, my phosphate levels elevated slightly on 3 separate occasions during the 5 week ramp up so I went from full days in the Day Unit to the ward for blood tests during the night. I’m not saying it was pleasant to have to spend so much time at the hospital but it’s worth it for safety reasons. I stayed only one night on each occasion.
Venetoclax is an excellent and effective medication. I’ve had no side effects on it and it’s worked!
Make sure you keep taking the water, it’s absolutely vital to avoid issues.
Good luck,
Newdawn
Hi Dym,
I spent no time in the hospital, & I was considered high risk! I was, however, softened up via Obinutuzumab. No hospitalization for that, either, but I was required to go to the infusion clinic every day for a week for IV hydration. Relaxing!
—Dave
I’m currently lying in a hospital bed after taking my first dose of Venetoclax. I’ll be here for 48 hours so they can monitor my bloodwork. I’m coming back next week for the first ramp up and will again stay in hospital for another 48 hours. I’m not expecting any issues as I have been getting obinutuzumab infusions, so it’s probably just precautionary. I only need to be an inpatient for x2 48 hour blocks for the first 2 weeks of the 5 weeks, but they will monitor my bloods closely the other 3 weeks. Best wishes to you!
Good luck, hope all is going well
I am in hospital for the last of my 2-night stays in hospital and am now on my full dosage of Venetoclax being 400mg per day. I am now on reduced Ibrutinib at 280mg per day and in approximately 4 weeks the plan is that I stop taking Ibrutinib. This will leave me only taking Venetoclax for about 24 months.
My Lymph nodes have virtually come, I am feeling very well. I am walking and cycling. The only issue is painful cramps from time to time in my calves and in my hands.
Question: Could you kindly confirm what is your treatment plan now going forward. Thanks
Your doctor probably just wants to make sure that you won’t have a problem with the drug. I didn’t stay in the hospital but I’m younger than most. Venteclax is the best drug i have ever taken. Good luck!
Yes you need to ramp up from 20mg to usually 400mg over 5 weeks, that is 20mg, then 50mg, then 100mg then 200mg then 400mg mg as the maintenance dose week 5. Since your blood is monitored every 6 to 8hours to make sure you do not develop Tumour Lysis Syndrome you need to stay in hospital. I went in on a Wednesday and stayed till the Friday 5 weeks running. Usually the following week- week 6 you will be given the first of 6 monthly infusions of rituximab. ( a few hours ione on day stay)This was my procedure 18 months ago- 6 months left on Veneteclax for me and all went and still going well so I wish you the same luck, Cheers
I am now on the full daily dose of 400mg of Venetoclax. I am due to stop Ibrutinib in four weeks. My lymph nodes have virtually gone and I am feeling very good.
Question: Once the 24 months of Venetoclax is up will you stop taking all medicines for CLL. Thanks.
After 24 months in veneteclax my specialist told me I come off cold turkey -there is no weaning off I like the ramping up at the start.When I asked how long I will remain in deep remission he was not sure-if I am lucky 4 years but since veneteclax has not been around that long for enough data to have been gathered about after stopping I take that answer with a grain of salt so to speak-so come on end of March 2021 as that is when I reach 24 months on Veneteckax-here’s hoping my doctor is right!!
I did not have to stay in the hospital when I started Venetoclax but I had weekly visits for bloodwork.
MY CLL is 99% in my marrow so I was not a high risk for TLS though my ist 2 ramp ups were in hospital as I was there with near zero neutrophils and pneumonia . Even so 1st 2 ramps fairly standard to be monitored not sure next 3 though. My only side effects low neutrophils and platelets same as I had with my failed ibrutinib. For the low Neutrophils I am on 3 weekly booster shots. Ventoclax is great I was MRDu at 12 mths going for 24 mth BMB next week.
Hi.what were the booster shots given to u for v low neutrophils? I have too..Best..
Neupogen booster shots usually self given in tummy area. I am on 3 a week and trying to reduce that but 2 a week sees lower than 1.0 reading so staying at 3 for the present. Reduced the Ventoclax to 300mg daily after 12mths once at no detectable disease but no improvement in neutrophils.
How are you doing Peacekeeper ? Have your neuts and platelets recovered?
Jackie
No platelets hovering around 50 to 60 nd I cannot make them get higher till I stop or lower venetoclax further. Neutophils around 2 prior to next booster. If I go back two shots rather than 3 a week they drop below 1. Otherwise my counts are normal and I feel good. Oh my CLL is all in the marrow when active .
I’m glad you’re feeling well despite the challenges with your platelets and neutrophils.
Used to injections had them also during 18mth Ibrutinib see,s I a, susceptible for these side effects
Yes I also did 2 hospital stays to ramp up.
It's best to do so as they can then ensure you are not affected by TLS.
Drink loads though! It will be monitored in and out.
Good luck
Hi jooby, when I started venetoclax I was not monitored as the dose was ramped up and I unfortunately blacked out causing fractured pelvis and vertebrae so I think it would be safer to have the hospital monitored stay. Good luck. I am only able to tolerate 100 mg. But doing well with this dose.
I started Venetoclax a year ago in September 2019. I too could only tolerate one 100 mg daily. My numbers have steadily gotten better and have a virtual Dr appointment next Thursday 11/12. Thinking may try two again.(?) have been on two Inruitinib capsules since March 2015.
I’ve been self isolating since March 13th. So this isn’t a lot different from last six years. I do miss inside family visits and grocery shopping. This will get better. Take care.
I started Ventoclax with 2 nights in hospital first week for 20mg dose, 2 nights following week for 50mg 2 nights following week for 100. Then 1 full day in for 200 and the a week later another 1 day stay for the 400mg.
In hospital for the 22 nights stay received an introvemous drip and regular blood tests and blood pressure tests. The 1 day stays in my case was get a blood test first thing, once results are with the ward about an hour later then take medication. After 6 hours another blood test and then once results are back again about an hour then allowed to go home. All was OK for me hope your 5bweeks visits go smoothly.
My ramp up was done as a day patient under observation and I went home afterwards each time.
I have just started on Venetoclax and following an abdomen CT Scan I was considered medium risk for TLS. My consultant asked where I lived in relation to the hospital (5 miles away) and was I happy to return for regular blood tests. I agreed, preferring that to stays in hospital. I started on a Thursday on 20mg with a full day on a drip of 2 litres of saline and a drug beginning with an R to prevent a build up of Uric acid. Went back the following morning for another blood test and then again in three days time as it was the weekend. No problems and so my dose was doubled up each Thursday after a prior blood test on Wednesday afternoon to ensure the ramp up was safe to proceed. For each ramp up, I was given the supply of tablets for the week with instructions to come back each Thursday afternoon and Friday morning for follow up blood tests. Following my last ramp up to 400mg last Thursday I received a call from the hospital on Thursday evening to advise me to have a 1 litre saline on the Friday morning as my EGFR level had dipped to 60. As of today, I feel fine. Throughout the 5 weeks I have also been given Allopurinol tablets to help prevent a build up of Uric acid and Aciclovir anti viral tablets. It's been a bit of a pain visiting the hospital 4 times a week but for me, preferable to staying in and facing a higher risk of contracting Covid.
I recently switched to Venetoclax + Obinutuzumab after having been on Imbruvica for 6 years. (Because of IB resistance). I was considered “moderate risk” for TLS (also, was neutropenic=0.2)
I was not hospitalized. I was given a weekly dose of O for 3 weeks & the 4th week, started the V ramp up. I was also started on Zarxio (neupogen) injections daily, 3 days prior to first dose of V (because V drops the neutrophils). I went to the clinic (this is a CLL specialist) for the first 2 days of each dose increase....where I received IV fluids & lab checks. I reached the 400 mg of V on 11/2 /20 & I have had absolutely NO problems other than mild nausea on first 3 days of V (20 mg).... none since. Zarxio was tapered down until discontinued depending on lab values. As of 10/26, my labs are all NORMAL except for platelets remain low at 88 (but was 27 before treatment started). I’ll receive 4 more doses of the O (monthly) & continue the V for 2 years. I feel so much better already & I pray your experience is just as good!
Yes. I had a heavy tumor load so I was inpatient 3-4dats each week the first 4 weeks of the ramp-up. TLS and very high Potassium were issues. I hope it goes well for you
Dym230109,
No hospital stays for me while on venetoclax, however, your doctor should be the person qualified to evaluate your individual condition with regard to risks and observation.
JM
Dear Magnus:
I just wrote you a long story, which the "computer-creatures" ate before I could post it. Basically, I recently spent a long week in the hospital, ramping-up Venetoclax, then I went home for 4 days, & then I returned to the hospital to resolve the TLS that I got from it, and to resume the ramp-up.
Bottom line, except for a few days of feeling very tired from the TLS, I never felt bad during the entire ramp-up. My story is still open, as I've apparently stabilized on a tiny dosage of only 3-4 pills (of only 50MG) per week, but the ramp-up process itself was painless and easy. Of course, we're all different, but even my "semi-horror" experience showed me that a basic ramp-up in the hospital should not be feared.
Gary
I began Venetoclax last October with a decrease in calcium and magnesium, and an increase in potassium. All of which was monitored during a 3 day hospital stay every two hours until everything stabilized. Now my platelets are low and my doctor said discontinue Venetoclax “for now”
Venetoclax
Venetoclax 
Venetoclax - hallucinations?
Obinutuzumab and Venetoclax 
