I have just started 400mg of venetoclax and would be grateful to hear people's experiences about sun exposure.
On a couple of occasions in the last two week I have been outside for around 30 minutes in the sunshine - on a walk and then just in the garden - and then felt symptoms that I would associate with heatstroke: headaches, fatigue, temperature for a short while and a bit of fuzziness in the head that meant I had to stop work and go to bed.
The doctor took swabs and bloods and said it wasn't a virus or covid so thinking that it could be sun related. I have previously lived a very outdoors type lifestyle and spent plenty of time in the sun, so would be interested to hear if anyone had experienced anything like this?
Similarly, I had a couple of small bottles of beer recently on a separate occasion, and woke up the next day as if i had been out all night. Be good to hear any thoughts or similar experiences, appreciate that I'm taking a high level of medication and fighting a diseases so my body is going through a lot and may be more sensitive to sun and alcohol.
Any thoughts gratefully appreciated!
Thanks
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Our_wes123
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No sun burn and I am trying to drink as much as possible while on the veneteclax so don’t think that would be an issue. I don’t really monitor my sodium intake or know much about that so could be something to look into.
I seem not able to tolerate the sun since on Venetoclax, so I wear protective clothing and hat while out. Also, I do drink plenty of water when outside. I also had a couple of beers lately and it did seem to have more of a punch than before I started the V. Maybe once your body adjusts, you may be able to handle more sun and beer. Wishing you the best!
Thank you! And yeah, hopefully it is a case of my body adjusting at the moment. The 400mg is only a few weeks old so maybe it might take some time to get used to it.
Read your post. Unsure if this is helpful, but my dermatologist suggested that I only use sunscreen products that have zinc in them to protect my skin while out. We are all vulnerable with the sun while on medication. Regarding the consumption of beer...you could be tested for allergies pertaining to the ingredients in the beer. Personally, I know have an intolerance to some of the ingredients in beer, so I can no longer have a beer. If I drink beer, I end up getting some vertigo. Hope this helps.
I have been told to have 2 visits a year with a dermatologist to check for skin cancer. I am on Acalabrutinib and more vulnerable to getting secondary cancers. I wear UV protected clothes and a hat when in the sun, and also wear sunscreen with zinc. Basically, be careful in the sun, but you don't have to be overly paranoid! LOL!!!
I have been on 400mg V for two months and have not noticed a problem with being in the sun. I tan very easily, so maybe skin type makes a difference? I have noticed that hydration and time restricted eating have helped with side effects.
My venetoclax did not cause any more problems with heat than my CLL has caused since diagnose. CLL tends to mess up ones' temperature control system. Alcohol tends to thin ones' blood and it is suggested by media not to drink alcoholic beverages when overheated, just makes the problems worse. Blessings.
I’ve been on Venclexta for the past 21 months, I also work in the golf industry and spend a considerable amount of time in the sun. That said I hydrate, hydrate and hydrate more and use sunscreen.
The drug, while effective, takes its toll on my platelets which are constantly under the threshold of normal. In other word I tire easily so exposure to the sun exacerbates the issue. I’ve been on one form or another of treatments for the past 3+ years and my experience with alcohol is simple; I no longer drink. Early on I learned the alcohol negatively impacts my body far more than any imagined benefit so I just don’t.
I drink a sprite zero everyday and I don't notice any issues. No caffeine but it is carbonated. I also like a good old McDonald's diet coke a couple of times a week. It doesn't bother me. I guess everyone is different though. Rich desserts don't agree with me since being on Venclexta.
Used to be an occasional beer drinker. Decided to indulge while eating out night and have one while I was on Venteclax 400mg. Keep in mind it had been awhile since I had any alcohol (2+ years). I didn't even finish my beer because my stomach started cramping so bad. I couldn't even walk back to the car because of the pain. Hubby picked me up at the front door of the restaurant.I even broke out in a cold sweat because of the pain. I'm not sure why this happened but I haven't had any alcohol since. I decided it wasn't worth it! At the time this happened I had enlarged abdominal lymph nodes per CAT scan. Pain went away later that evening and never came back thank goodness. 🤷 As for the sun, I noticed I would wear out quicker and sweat alot more than I used to. Hydrate! Hydrate! Hydrate if you have to work outdoors! Wear sunscreen and a hat. Use bug repellent! Bug bites were horindus for me on Venteclax. Hope this helps.
thanks for sharing your experiences. Luckily I haven’t had a reaction as bad as what you experienced but it was certainly something I hadn’t had before.
I'm sorry to hear of your problems with sun exposure (and alcohol), since starting Venetoclax. I’m not on Venetoclax but since starting Ibrutinib several years ago I’ve had similar problems.
If I’m in the sun for more than about 15 minutes (or in dappled sun for about 30 minutes), I’m not too bad at the time but suffer for it later in the day. Like you, I get headaches, fatigue, brain fog and can’t function. I also get nauseated and don't want to eat. I don’t get skin rashes from the sun, just these other symptoms.
Last time I drank alcohol (at my son’s wedding), I got similar symptoms so avoid most alcohol now. I was never a great drinker but coped fine when I did have an occasional drink (unless I took hay fever pills at the same time, which was disastrous
Like you, I’ve always lived an active outdoor lifestyle, spending plenty of time in the sun, but I’ve never reacted like this before. I know to keep well hydrated.
Sadly I haven't found any solutions, but have learned to adapt. I still enjoy hill walking, but always wear long trousers, long sleeved tops, a big sunhat, big sunglasses, and choose wooded, shady places to walk on sunny days. My husband has seen what happens to me if I’m in the sun for long, and the dear man packs an umbrella in his rucksack, to protect me in places where there’s no shade.
I’ve never had any explanation of this, except that listed in the side effects of Ibrutinib is sun sensitivity in respect to exposed skin easily getting red/burnt. I haven’t seen my other symptoms mentioned so it was very interesting to hear that you are experiencing the same.
It’s possible that for you, this will just be a temporary blip – not due to Venetoclax, and will pass.
However, as you say, when we’re fighting nasty diseases with powerful medications like Venetoclax and Ibrutinib, our bodies are being hit hard and extra sensitivities may kick in, that we don’t usually have. Venetoclax is often taken for a set time, so your problems should end when you stop it.
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Strange thing is that the same thing happened many years ago, after I’d been taking Lansoprazole (to reduce stomach acid). I tolerated it well for a while, then started to get same symptoms after sun exposure (same as I got later with Ibrutinib). Doctors couldn’t understand it, till a dermatologist I saw for another problem, told me that a rare side effect of Lansoprazole is sun sensitivity. I stopped the Lansoprazole then was fine in sunshine (Until I started Ibrutinib a few years later).
People vary a lot in the way they react to drugs. Some side effects are very common and well recognized, but some are rare and not yet acknowledged.
Thanks for sharing your experiences. Very interesting and useful. I will definitely make a more conscious effort to take precautions in the sun now, and I think the alcohol might be a bit of trial and error. Err on the side of caution while the drugs are relative new to my system and see how things go.
Good advice! Have been trying to drink water or juice whenever I have anything alcoholic but maybe I need to keep an eye on the salts and minerals a bit more as that is not something I generally monitor
I wear upf 50, long sleeve sun shirts and a Sunday Afternoon Adventure Hat (upf 50) and have not had a problem tolerating the sun. Also, my oncologist recommends not drinking alcohol while being treated for CLL. She feels it puts extra stress on my liver.
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(Until I started Ibrutinib a few years later). 
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