I am about to start 100mg of Venetoclax on Tuesday but since I've been on the 50mg dosage I have had really hot spells where it feels like I have sunburn on my face and my forehead is dripping but my temperature is absolutely fine.
Has anyone here suffered from this at all?
Thank you in advance
Chucky.
Written by
ChuckyB
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I have symptoms similar to that when my cancer is active. I am assuming you are having bloodwork done routinely during venetoclax ramp up, and increasing your normal fluid intake to make sure you are well-hydated. Just in case your symptoms are related to killing off large amounts of CLL cells. There's a lot of metabolic activity going on during ramp up, and while I am not finding your symptoms listed specifically to ramp up I suppose these symptoms could be attributed to killing lots of CLL cells. Do you have any other comorbidities that might be affected by ramp up? For example, certain cardiac patients may be sensitive to the potassium changes occurring. If you have gout, your system will be stressed more than usual with an increased uric acid load.
Yes I have been drinking plenty of water, yo the point where I am up at least 6 times a night peeing. 🤷♂️
I have no other issues or side affects as such, just hot face and sweating.
I like you have looked for side affects for Venetoclax but not found this issue, so I put it down to the ramp up, I will ask my specialist on Wednesday when I am in for my next increase.
Hmmm so OK, good you are hydrated. I wonder if you have lymph nodes in your head/sinus area that are moving/shrinking as the medication kills CLL cells. They could be impacting nerves in that area. I know I could hear my heartbeat in my head last year when my disease was active & nodes were changing size, which finally resolved after treatment started.
I would mention it to my docs. The initial Venclexta studies didn't have a huge number of patients, so I assume that the side effect profile will be expanded over time. If this IS due to the V and not some other reason. Curious as to what your docs say, compared to what my doc said about the head burning I had.
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