Final week of Venetoclax ramp up

[Jooby59]

Yesterday I took my first 400mg of Venetoclax - ramp up has been going well but with a few side effects.

Last week’s blood test showed my sodium levels had dropped but consultant didn’t seem too worried. I am experiencing ear pressure, a whooshy head with lots of dizziness and am getting tired really easily. I am hoping this will all pass when my body is used to the new regime. And, yes, I am drinking the prescribed amounts of water!!

Just wondered if anyone else has had these symptoms.

[cllady01 Former Volunteer]

Jooby, if the Dr. hasn't said, or the blood report doesn't say you have hypotremia, he wouldn't be worried. It is the amount of water to salt ratio balance that changes and it is most likely (though I am not a Dr.) your drinking the new amount of water may have something to do with the sodium being lower.

The kidneys may be having to work a bit more to clear the debris, so maybe slower and the combination of the the water being more than you are used to drinking may be a cause. But better that than have the meds sitting in the kidneys for any longer---and the Dr. has indicated it is not a problem.

(I have not been treated, but have a couple blood draws from PC which show a slightly lower sodium level---and I have begun to drink more water to get used to that for when the treatment time comes.).

The ear situation something I would be calling the Dr. about.

[Sepsur]

I start final ramp up next week. to 400mg. Mostly ok - a few blood blisters, sore gums on occasion. I’ve had permanent spinning since restarting ibrutinib 6/7wks ago, this sensation has lessened over last 10 days only to be replaced with occasional whooshing. Yes I’m drinking enough too. Ditto to ear pressure, getting breathless quick & pressure across chest. 4 ECGs this week down to my heart getting slower & slower. I’m now down to 42-45 average ( Olympic Athlete rate 🤣). Apart from that - feel pretty good.

[Jooby59 in reply to Sepsur]

Hope you feel better soon. I am hoping this head/ear problem just disappears as I feel great apart from that!

[Sepsur in reply to Jooby59]

Same here 😊

[jaypax in reply to Sepsur]

Hi. I'm at exactly the same stage as you Sepsur, on 200mg this week. And have much the same symptoms as you (ear pressure and spinning) although my blood pressure was mis-behaving and unstable during the first couple of weeks but it's settling down down at around 130/65. Pulse is averaging 52 which is quite normal for me but the heart is pounding which is a bit of a concern . But apart from those small problems it's going well. Drinking around 2 litres a day and getting exercise every day.

I'm wondering if the "whooshing" sensation is related to blood pressure issues but I assume that you've had that checked.

Best wishes. Jeff

[Jooby59 in reply to jaypax]

My dizziness etc started when I increased to 200mg. My blood pressure is fine but my nurse wonders if I am drinking too much water now! So I am having to record that. Hope you continue to do well too.

[jaypax in reply to Jooby59]

It sounds like you're having good care. Venetoclax is an amazing treatment! Keep up the progress.👍

[Jooby59 in reply to jaypax]

Thank you very much and, yes, my hospital is fantastic .