I've been on Venetoclax monotherapy for 15 months now and bloods are good. But I have developed a tremor and have what I would call "brain fog" Also not sleeping well at all. All this could be age related - reached 80 in March but I'm just wondering if anybody out there on Venetoclax is having the same issues.
My GP diagnosed "essential tremor" and prescribed Clonazepam and prescribed Zopiclone for my sleep but I'm not convinced either are helping.
Any comments or advice would be welcome.
Best wishes Jeff
Written by
jaypax
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I think a higher than usual percentage of us recognise the words brain fog, personally I suspect mine and a few others are as a result of the isolation due to the virus. Physically and mentally I am not in the place I was before this started, finding motivation hard even think I may actually return to the gym to find the self I used to be. I am only W&W so I hope other that are on Ventoclax will respond to your request.
Meanwhile hang in there and let us know how you get on.
Rather than adding more drugs to your system, ask your CLL doctor if you can take a venetoclax vacation for a month by month reassessment. My wife did that after only 11 months on venetoclax and has been on the venetoclax vacation for 34 months with blood work in the safety zone. Again I emphasize ask your CLL specialist as I have not heard that Venetoclax disrupts sleep or causes tremors.
i would talk with your physician. both drugs you mentioned could be causing or contributing to the brain fog you are experiencing - especially if you are an older adult. i worked as a nurse for 50 years and saw this many, many times.
Thank you. I am concerned that I have become too reliant on sleeping tablets and they are not proving effective any longer. Maybe it is time to have a discussion with the doctor about the problem. Another approach to the sleeplessness perhaps. Best wishes Jeff
alot of our doctors were using melatonin for sleep issues in the >70 yo. maybe something to discuss with yours? i am not a physician however i do know that beta blockers are most often used for benign essential tremor - not benzodiazapines which can cause all sorts of side effects. i do not know about about the venetoclax side effects yet so can not add any wise words. i am currently on the ramp up (week 2) stage and all i feel is nausea.
Hello.I hope you don’t mind me asking how you’re doing on the Venetoclax ramp up?
My husband is in hospital at the moment, starting the 200 mg Venetoclax dose today.
I am sorry to hear about the nausea ( Paul had dreadful nausea with FCR and I pray he doesn’t with this… so far, so good.) He always takes it with food and has about three litres of liquid in a day.. I have read that helps ( but I’m sure it’s not the same for everyone).
I hope you get through this tricky bit and it settles down.
i have no idea what to expect from the venetoclax as i am only on 50 mg this week. i drink 2 litres of fluid a day and do my best to eat but that has been a problem for me at 630 am. have lost a bit of weight but not a concern as yet. i am a smaller person so we are watching that. so far, my only side effect has been nausea but hard to discern if it is the drug or the large lymph nodes in my abdomen as it isn't a new symptom.
i live in canada and they don't hospitalize you in my province.
3 days/wk i go to hosp for bloodwork and a check. so far, so good.
i was on ibrutinib about 1.5 yrs ago and had absolutely no trouble until 4 months in when afib started. told my oncologist never again! he initially wanted to do FCR but i am trisomy 12 and unmutated so that was a no go. we were going to start with obinutuzumab before the venetoclax but given the state of covid in the world and no antibodies for me he felt it wasn't safe right now.
sorry... got carried away with history.
sorry to hijack your thread jeff.
thank you for your kind words.
hope it goes well for paul and jeff, i hope you get the answers you need.
Yes, thinking about the melatonin route to help the sleep problem. Nausea can be a problem on ramp up, I was prescribed Cyclazine hydrochloride tabs for use when it was at it's worst, helped a lot. Best wishes. Jeff
I find nausea hits still and there doesn't seem to be any rhyme nor reason to it either but the medication does the trick in an hour and it's certainly not every day
I am on venetclax 6 months in ..I sometimes have trouble sleeping but I convince myself that if I dont sleep I dont need it and the following day I try not to nap but work hard in the garden as long as I can and then I sleep.Luckily I havent experienced tremor nor have I seen it mentioned in the paperwork that comes in the 400 package
Thanks for your reply. Like you, I try not to nap in the day and keep busy until bedtime. Sometimes it helps but waking after only 2 or 3 hours sleep is frustrating. There's nothing in the Venetoclax info about tremor so maybe my doc is right, it is as it is. Although it is worse in the evening so is it related to my lack of sleep problem? Thanks again and best wishes.
This is a tad off piest, but could be just as important.
I used to play sport at a high professional level and when we pleyed, especially a big night time game, we would be given zopiclone afterwards to help us sleep due to the amount of adrenaline still pumping in our body. It worked brilliantly, but one massive side affect was what we could only describe as "brain fog".
Please please please think long and hard about this drug, it works almost too well and your body gets used to it very quickly and craves it more & more.
I'd ask your GP for something less strong and less dangerous.
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