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Working during CLL treatments?: Hello, I have... - CLL Support
I have had CLL for about 7 years, and have been in the watch and wait stage until just recently. I had to start treatment last week, and will be doing a combination of acalabrutinib, obinutuzumab, and venetoclax. I have started the acalabrutinib, and will begin infusions next week.
I am also a physical education teacher, and I am wondering what people's experience has been on this regimen. I have taken Fridays off for the rest of the school year to have my infusions and/or blood work, but I'm wondering how I will feel after these. My job demands a lot of energy, and I am concerned about how I will feel throughout the treatments.
If anyone has done this, and is willing to share their experience with the side effects, I'd appreciate it.
Thank you!
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LittleWolf
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Hello LittleWolf. I have taken acalabrutinib, venetoclax and rituxan (similar drug to obinu) at one time or another. I expect that you will get highly variable answers to your question. Some people will have few side effects and be able to work during treatment with no problem at all, others may have side effects that make work problematic.
As a very general rule, I would say the younger and more fit one is, the better they will do. As a physical ed teacher, I imagine that you are quite fit. That would argue for you being able to manage work. Unfortunately, being fit is no guarantee of how you might tolerate your meds. Neutropenia is a common side effect of the drug combo you will be taking. Neutropenia is often manageable and does necessarily not make one feel bad, but depending on the level of neutropenia, staying away from work might be necessary due to the increased infection risk.
Thats not to say you will have neutropenia, many or most probably will not. Thats only one side effect, it’s almost impossible to predict who will have what side effect, if any.
I am recently retired, but before retiring I worked through all my treatments but for a few days here and there. Treatment actually made me feel better as time went on.
I like your idea of taking infusion days off. You might consider taking a week or so vacation when you start treatment, just to focus on your health and not worry about work as you see how each med affects you.
I would finally add that you consider meeting with your supervisor and explain to him/her that over the next year or so you will be taking three cancer meds, anyone of which might cause a side effect with little predictability. While your plan is to work during treatment, and it’s possible you can, there might be days where you have to stay home. I think the vast majority of employers will work with an employee during cancer treatment, even if HIPPA laws did not require them to accommodate people in treatment anyway.
Good luck to you. I think you probably will be able to work, but no one can say for sure. I would say to the best of your ability to focus on your health and dont stress too much over work. Most employers are good about this. I was self employed, but had business partners. They could not have been more supportive. I do understand some employers are not as understanding, but I think most are.
Thank you very much for your response. I do have a lot of support at my school, and if I need additional time, I can take it. I think from what I am hearing/reading, I will probably just need to take this day by day. The first infusion will give me a sense of how I will feel moving forward, and I will just listen to my body, and not stress if I have to call in sick from time to time. I just want to have energy for my kids, but hopefully this will not disrupt things too much! Thanks again for your thoughts on this!
Yup, I think you have answered your own question here. Take it day by day, put health over work and do not stress if you have to miss some work. Insofar as energy, I was very anemic when I started treatment, so treatment improved my energy levels greatly. I am over 70 and still on calquence. I walk about 5 miles a day, work out every other day and play golf as much as the weather allows. And I still have energy to spare for my grandkids. I do know I am fortunate in that regard and that fatigue can be a real problem with cll for may people. But I do think you have good reason to hope treatment will not sap your energy, it may in the long run make you feel even better.
Venetoclax ramp up requires a lot of visits, generally two days in a row to check your bloods. I always felt really tired after the O infusion, usually about 2 days...others don't...I was quite sensitive to both drugs so each V ramp up gave me fevers which meant at least an overnight stay in hospital, sometimes two or three days to get antibiotics or a blood transfusion...it is really individual. You won't know until you go through it. I was able to go back to work from cycle 8 I think. Once the infusions were over (6 cycles), I got an infection so I needed a course of antibiotics. When I recovered, I was fine to work but I worked remotely till cycle 11. It was probably wise as I had severe neutropenia throughout so I would have been very anxious - I worked as a primary school SENCO at the time. I would speak to your employer and explain your situation so they have a back up plan in place in case you cannot work and hope it won't be needed. My employer was very understanding and supportive. Good luck 👍🏻
I have been on ibrutinib and venetoclax since October 24 and have continued to work throughout. The venetoclax ramp up requires lots of blood tests initially but as the hospital is close to my office I could just pop out as needed.
I took 6 weeks off work during the initial obinutuzumab infusions and venetoclax ramp-up, which entailed lots of separate hospital visits for blood tests. I probably could’ve gone back to work a little earlier, but I was very grateful to have the time off so that I wasn’t stressed about getting to the hospital for blood tests, and could rest the day after each infusion, when I always felt a bit weak.
They’re doing all of mine in one day… 6 hours. I took that day off, obviously (it’s a Friday). Wondering if I should take Monday off as week for this first one, just in case it’s more difficult than I expect?
Normal protocol for Obinutuzumab is 10% over 4 hours. Then 90% over another 4 hours, can be given immediately if there is no reaction. 50% have a reaction.
Have they changed the protocol due to the first cycle of Acalabrutinib?
Normally one cycle of Acalabrutinib sees the ALC rise. That is a predictor for an Infusion Related Reaction.
I have the perception that in US some people that have a reaction get dumped into ER. Maybe wrong.
I'm really not sure. I am in the US... and I will have been taking the acalabrutinib for three weeks before I start the Obinutuzumab infusions. I was told that it will take about 6 hours for the first one, then three hours for the following three (weekly). Then I move to monthly. I think this is a newer way of approaching the disease. Because I will also start venclexta a month after these infusions start. So, eventually I will be on all three meds. For about 6-12 months, depending on the success. I am really hoping that the first one is not too rough.
I began Obinutuzumab infusions 5 weeks ago. My first infusion took over 12 hours due to a slight reaction, which led the medical team to slow down the infusion rate. This adjustment worked well, and I felt fine afterward. Over the next 3 weeks, the infusion time decreased, but it still took over 6 hours each time. I'm now in the ramping-up phase of Venetoclax.
Originally, I planned to continue working through the treatment, only taking the treatment days off, but I've since decided I need more time to recover—particularly during the weeks when I'm receiving both Obinutuzumab and Venetoclax.
Additionally, I've been advised to be mindful of my compromised immune system and limit contact with others. I've also found that exercise is helping me. On the days I don't exercise, I can really feel the difference in how I feel.
Hello Littlewolf. I have had several mab infusions with only one bad reaction. That was with Rituxumab on my fourth infusion. I did fine on the first three. For most people they do fine after the first one. I’m always the exception to the rule it seems with my cll. In any event, even with the bad hives reaction I had, I was fine the next day after all my infusions. I doubt you will need to take Monday off for a Friday infusion. We are all different though.
I had the same treatment for CLL in 2022 starting on New Year’s Day.
After initially responding poorly to the infusion I settled on the subsequent treatments and found them easy enough to take.
I found the psychological aspect more frustrating, as in, ‘why me’ however support and counselling helped immeasurably.
I was 52 at the time, I work in a prison and for many years as a PE officer. I have kept fit and strong but the treatment left me fatigued and listless initially.
I went back to work after 18 weeks through being bored at home, I had some adjustments.
Over the coming weeks I had periods in isolation in hospital due to losing all immunity to infection. The NHS were fantastic.
I continued at work until the November whilst still having the last few infusions and taking the pills.
November 22 I was given the all clear and am still in remission.
Listen to your body and take time to rest when the fatigue hits.
be aware though, as you will look ok, people will assume there’s nothing wrong with you, be sure to investigate what adjustments can be made for you.
Hi, I think everyone is different. I had bad side effects with venetoclax. Vomiting a hour or so after taking it, even with anti nausea meds, which made me anxious about not getting my venetoclax into my system, but a wonderful, experienced nurse suggested taking it after dinner instead of after breakfast, which worked like a dream. Good luck, and be kind to yourself, being "brave" is exhausting.
Obviously everyone is different. As for myself I worked everyday except treatment day. I felt more energetic than I had for years. I enjoyed my infusion days not having to work but couldn't justify not going the days in-between. I was 61 when I started two and a half years ago. Best of luck to you. I am betting you will do awesome.
Thank you Gradyboy. I hope so! My biggest concern is not having the energy I need for my students. I teach 5-7th grade Physical Education, and they are a demanding bunch!
I don't know if anyone has the energy for that. LOL How is your current energy level approaching treatment? I am just guessing but I think you may be pleasantly surprised. My energy level is so much better than it was the 10 years proceeding treatment. I hadn't realized how sluggish I felt because it was gradual. I thought it must be a part of aging. I also work in education but in an administrative position in disabilities. I don't have to chase kids.
I did just V&O and my energy level soared after a couple of treatments. With the weekend to recover from any reaction, if any, I think you'll do fine. Cheers to a deep and lasting remission.
Hubby started on the acalabrutinib (Calquence) twice a day tablet last Nov 2024 & all swollen lymphnodes have shrunk & WBC gone from 127 to 64 at today's appt plus other good lab numbers. He had no infusion. He will have CT scan next month to see if all lymphnodes are down. Hang in there. The meds work with a few side effects.
If you find fatigue to be a problem, B vitamins, chia seeds & black seed oil help to boost energy on the days you need to work. Don't take them on infusion days. Try to eat as much dark leafy greens as possible & keep water intake up. This improves oxygen delivery in the body & supports your bones. Daily meals should include mixed combinations of proteins to ensure the completeness of amino acid to support muscles as they hold your bones together. Quinoa, buckwheat & chia seeds are considered complete with essential amino acid. Examples of protein balance could be brown rice pilaf with quinoa & lentil or a smoothie with fruit, spinach & buckwheat. You decide what you want as an active person & how to achieve it. If you are too tired or too sick stay home & don't feel anyway about keeping people out of your hair. Just tell them not today no matter how they feel about it. If you can take the summer off this would be a good time to do so. It's a great opportunity to plan & make adjustments in your approach to getting the best out of life despite CLL. School should be out next month, no later than the end of June depending on where you work in the US. Triage Cancer has great info on working through treatment. Reach out to them. They respond quickly & are a very big help. Last but not least speak to your pharmacist. They specialize in cancer care and can help you plan for treatment. I wish you the very best.
I went through a year long regimen, at 72, of V&O and never felt poorly, but my blood thought otherwise and I was hospitalized for closer monitoring. I feel great now at 75. Best of luck to you!! My best, Wendy
I think you will be able to continue working. The steroids given before the infusions kept me from sleeping for two-three days after the infusions,but I still had enough energy to exercise and be active throughout the day. Good luck and drink plenty of water. You've got this!
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