Morning..
Could I just ask, for those on this treatment, did you need much time off work, i have completed cycle 1 & so far so good, we're any of you able to return to work during treatment?
My consultant advises waiting until after cycle 3 but what are other people's experiences.
Thanks
Hi mfc86,
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If you are using the recommended cycle with Obin in cycle 1 and the Venetoclax in cycle 2, you may find that there are lots of trips to the hospital for testing in cycle 2. See this discussion: healthunlocked.com/cllsuppo...
Len
Here is the schedule for blood tests during Ven ramp up. See all the blood tests needed to check on blood minerals to avoid Tumor Lysis Syndrome, and they suggest that you stay near the hospital until the test is completed and reviewed by your doctor's team.
Hi,
I don't post much but I have a question about this schedule. I'm starting V sometime this month. From what I've read here and elsewhere it seems the best thing to do is take the V at night. But if you are taking it outpatient and take it at say, 8 p.m., how are they going to take a 6-8 hour blood check during the 20 and 50 mg ramp up?
Thanks for any insight.
Twilight999
During my ramp up, I had to take the drugs around 8:00 am. But when I had some gastro issues, my Dr. suggested switching to 8:00 pm or later (after my evening meal). So over about one week, I too the drug one hour later each day and then took it in the evening for the next 5.5 years.
Len
I am currently on this treatment, just had my third cycle of O. I haven't missed any work except for day of infusion. I feel absolutely fine with no side effects. I am also on 400ml of V daily. I do recommend taking the Venclexta with evening meal. Someone recommended that to me and I haven't had a single issue. Best of luck to you.
I had V& O three years ago and I worked while taking it. No issues. I started it again back in March of 2022, again I continue to work while taking it. No major issues. Yes when I had the infusions I went home afterwards but back to work the next day. I was 63-64 during the first treatment cycle and now 65-66. It wasn’t a problem for me. Yeah my remission lasted less than 2 years, a bummer
Not sure why they would suggest not working.
Best wishes.
UGH!! I am sorry to hear your news. I completed my O+V 12 month treatment cycle about 10 months ago. Had my 10 month checkup last week. The doc wants to see me every 4 months for routine lab work. All is well today. My blood components were all normal or near normal. Doc was pleased that my blood is coming back to healthy levels. Doc told me that recent remission statistics are showing about 60% of O+V patients are still in remission 5 years down the road. He told me that if/when my CLL raises its ugly head again that there are new drugs in the works I could possibly receive.... or he could start me back on O+V, if I am out a number of years from my last treatment. The good thing about your CLL relapse is that there are followup treatments that are highly effective. I hope I can fall into the statistical range of 5 years out for remission. All the best to you in this CLL fight!
Hubby is on this treatment starting last spring. He has missed exactly 1 day of work, but I say that with caveats. He worked from home on infusion days with understanding that production would be limited. He insisted on going to work a few times when I thought that was not a very good choice. He is able to go in late or leave early for appointments with no issues. He did lose weight rapidly in the beginning and was exhausted. It is EXTREMELY important to follow orders and eat and drink appropriately. If your job hinders that, your job needs to come second. Over all this treatment is a god-send and has been very non-intrusive.
I am just about to go to my haematologist next week to discuss about starting with O & V treatment. I have been wondering the same thing about working at the same time or having to stay on sick leave. I work as a nurse on a IC unit and am wondering what the risks are about catching infections. Happy to hear that many have been able to continue working and hope it will be possible for me too!
Hi
I worked rom home during my treatment (the advice from my consultant because of covid). Didn't miss a single day of work. Made up the missing hours and even worked whist having my infusions. I was lucky enough not to have any significant side affects. I hope it's the same for you
I had the same experience as Jake. Hope you do too!! Some days earlier on in the treatment I felt a little bit of brain fog, but it didn't stop me working (on a computer). Good luck!
My experience was different to these earlier responses. I went straight into treatment after diagnosis. I have a mentally demanding job and was quickly unable to function from the start and stayed off work for two months. I had a very supportive employer. I started back in cycle 3 and found regular periods of brain fog through cycle 3 and 4, quite often short, and times feeling fatigued. WFH meant I could take short breaks and power on when I felt capable.
my consultant advised me to not work whilst having treatment but I do have quite a demanding job. I had bouts of sickness and chronic fatigue throughout . It could be because I also have lupus and Sjögren’s syndrome as well. However after infusions finished I went back to work on a phased return. Completed veneteclax in October after having a neutropenic sepsis then the consultant decided to stop treatment. Fingers crossed !
I had a full course of O+V a couple of years ago. I was on sick leave during the first 6 months (when receiving obinutuzumab) but went back to work once that was finished and I was only on venetoclax. I felt very tired for several days after the obinutuzumab infusions, so would have had difficulty working for about a week after each infusion. Working would have been OK for the last 2-3 weeks of each cycle. Working while only on Venetoclax was fine.
One thing you need to be prepared for is that you may get a lot of other infections while on treatment. I was constantly sick with viral and fungal infections, chronic sinusitis and so on. Of course work is an incubator for these things, so it might be wise to limit exposure.
I didn't take any time off from work. I worked with my laptop through the infusions (and one month of venetoclax and allopurinol).
But there was an ugly catch. A couple months after it seemed to be over, my oncologist asked me to take another month of venetoclax, but this time without the allopurinol. Three days later I was in the ER with kidney failure.
I have a different oncologist now.
Hi. I'm currently in a trial at MD Anderson and my trial consists of Obinutuzumab, Atezolizumab and Ventoclax. I'm now finished w/ the Obin and Atezo infusions and just only on VEN. I have been able to work the entire time. On day 1 of my infusions, I would get Obin and Atezo and b/c they gave me Benadryl to counteract any side effects from Obin, I would sleep for about 3 hours. Day 1 of each of the 9 cycles took about 10 hours b/c of the blood work, seeing the oncologist before the infusions and then of course, the infusions. So on Day 1, I couldn't work b/c of how long it took and of course, the Benadryl. But I've been able to work during this entire time. I'm currently on cycle 12 of 14! Just 2 months to go and hopefully I'll be uMRD!!!
My hubby is currently on treatment and going for his LAST O infusion today!!! My guess is that since every person's body reacts differently during the ramp up period of BOTH drugs, the best thing to do is to proceed, knowing that you might experience some level of side effects.
My hubby experienced low blood oxygen level during his very first O infusion, the rest were happily uneventful. The "V" drug has caused him a bit of lethargy, constipation and edema, which he is managing. Nothing serious at all. He was one of our specialist's first patients NOT to require hospitalization during the V ramp up. He is very tired after his infusions, but the steroids also keep him up late that night. Overall, this treatment has been a Godsend! My personal opinion, is to keep your life as close to "normal" as possible with regards to work and other activities. Do beware, that once you start treatment, you will be more susceptible to infections, like Covid, the flu, and even UTIs. Maintaining pandemic protocol as much as possible will also serve you well!
That said, for my hubby, the "V" drug has been more toxic that the "O" infusion. You might or might not experience side effects from both while your body adjusts. Get every vaccine you can BEFORE treatment begins, since you will be rebuilding your immune system. Stay pandemic safe as possible to reduce exposure to infection.
In our house we celebrate the completion of EVERY treatment month with a special meal and/or streaming movie. We are truly blessed to live in an era of immunotherapy treatments like these, and with the amazing extremely knowledgeable support group that manage this forum! Cheers!
Ugggh... spoke too soon, Neutropenia hit, infusion was delayed until under control. V will be reduced to 300 MG after 1 week without.... He will receive GCF injections if things dont improve on their own in a week.
My husband only needed off for apts for infusions and the venetoclax ramp up blood work (sometimes 2x a day). We had a full calendar from the start which was helpful. He felt great throughout and continued to work FT and kept up with his running. He had a very easy time with it, hope you find the same.
Hello mfc86 i had Vand O treatment started in feb 2021. My experience was maybe an over reaction to covid by the specialist keeping me off work for 6 months. Like other people have said i could have returned to work after first few weeks wearing mask and taking precautions. i felt good in those 6 months off but specialist over protected me. Just finished recouping the lost pay from that time ( im a Motor Mechanic ) .Covid caused faceless appointments but i dont understand why i still have phone type specialist appointments currently.
Hi mfc86,
The first 8 weeks of V+O are the most intense, with lots of hospital visits for infusions, blood tests and appointments. I took 6 weeks off work and it was great to have that time off - not so much because I felt unwell (although I was tired at times) but rather it was good not to have the pressure of work deadlines, and trying to fit hospital visits in around a work schedule. I wish I'd taken 8 weeks off!
Best wishes for your treatment 
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