Venetoclax and Swelling

[umpireman]

I was on Venetoclax for 12 days late in March. My legs and feet began to swell and my oncologist took me off the medication on April 1. The edema has continued to this day. My cardiologist put me on 80 mg of Lasik twice a day and 25 mg of a diuretic once a day two weeks ago. The swelling has continued at about the same level as before but is not getting any worse as of this date (Apr 27). I have not read of anyone else on the forum experiencing the same problem with Venetoclax. Has anyone else developed a similar problem? Your advice will be appreciated. John, the umpireman.

[Newdawn Administrator]

Hi umpireman and sorry to hear you’re experiencing these problems. I’m starting Venetoclax on Monday so possible side effects are of particular interest to me. In truth, this isn’t one I’ve heard of greatly in relation to Venetoclax but maybe so with Ibrutinib where cardiac issues occur or were existing.

I see you have heart issues, including fast heartbeat and ventricular tachycardia and also had to discontinue Ibrutinib. It does sound as if you started treatment with a pre-existing tendency toward the problem rather than it being a particular significant side effect of Venetoclax. I’m wondering if you managed a high enough urine output when you were on Venetoclax?

I hope the odema subsides with the help of the meds and it could take a little time. Have your blood levels stabilised and have any other CLL meds been proposed?

Best wishes,

Newdawn

[umpireman in reply to Newdawn]

Thanks Newdawn and good luck with your treatment starting Monday. I doubt if you will have any edema. I seem to be super sensitive to these powerful drugs, and, as you pointed out, had the same problem with ibrutinib last year. Also, my age might be as factor (85). I was drinking plenty of water but my urine output could be part of the problem. John, the umpireman.

[maggiesgrandmom in reply to Newdawn]

Good luck Monday Newdawn

[Newdawn Administrator in reply to maggiesgrandmom]

Thanks Janice! 😊

Newdawn

[Shooey in reply to Newdawn]

Hi Newdawn

Just wanted to add my good wishes for Monday, I ramp up to 200mg this week, so far so good except needing to wee 2-3 times during the night. I’m not on a trial so haven’t had an overnight stay as the late pm bloods have been fine, the bag is always in the boot of the car though, just in case!

Hope all goes well for you

Best wishes

Shooey

[Newdawn Administrator in reply to Shooey]

Thanks Shooey, glad its going well and you didn’t need overnight stays. I’m hoping I don’t need many!

The nighttime bathroom visits are normal for me anyway!

Newdawn

[Hidden]

What happens when cll patients go on any of these targeted drugs? The answer is they all start drinking far more Water than they did before. I suspect some of the diarrhea and swelling side affects you read about is actually attibutable to that. However i have no good answer because you still need a lot of water-especially to avoid tumor lysis issues. Standing more and walking more can help eliminate more water.

[Newdawn Administrator in reply to Hidden]

I suspect it’s more about the individual’s renal capacity to safely expel the added water needed and of course that could be impaired by cardiac issues.

I’m expecting to spend Monday night in the hospital bathroom and will be happy to do so because odema is a risk.

Newdawn

[81ue in reply to Newdawn]

I was hooked up to IV when I started venetoclax last week. They want you hydrated. I had an issue with hydration at previous hospitalizations because the water ended up making balloon legs for me and it took a week after disconnecting IV to get the legs down to normal. Last week I wore compression stockings that went up to my thighs because I wanted to prevent the balloon legs from IV. I think the water retention in legs is bad for the heart and makes your heart work harder in my opinion, and makes legs painful. Last time I had balloon legs I was up 30 pounds in weight. The compression stockings worked and I'm out of the hospital with normal weight and normal legs.

[umpireman in reply to 81ue]

81ue: Glad you figured out how to combat the swelling. My cardiologist is trying everything to avoid my having to go to the hospital where the "bugs" run rampant. But my weight has stayed the same and my swelling, although not increasing, is not receding either. When I had a similar situation in the Fall of 2018, I did end up in the hospital and received a antibiotic drip along with high dose Lasik. I was basically cured in 5 days. May have to do this again. John, the umpireman.

[Smakwater]

I have been on 400mg venetoclax for four months. I drink aproximately 64 ounces of water throughout the day with moderate activity, and increase to 80 - 100 ounces with elevated activity.

I learned early in the game that when my physical activity increased without increasing water, I experienced high creatine resulting in dizziness, weakness, and fatigue.

Other than the water issue, I have not experienced any adverse side affects until recently whereas my neutrophils dropped below .97.

JM

[umpireman in reply to Smakwater]

Smakwater: Thanks for your reply.

[Debinoz]

Just saw your news good luck Newdawn - sorry about your swelling umpireman - I’ve been on Venetoclax for 3 and a half years and haven’t heard of this being a side effect.

[Newdawn Administrator in reply to Debinoz]

Thanks Deb. I thought of you as I was coming into hospital today and muttering about overnight stays. Thinking of the sacrifices you made and distance travelled made me feel guilty!

Glad all is going well for you,

Newdawn

[MsLockYourPosts Passed Volunteer]

I would consider seeing a good nephrologist if the edema has still not improved, if you haven’t already done that.

[CarmenfromParis]

Hi there: I experienced something like that at one point and it seems it was more of a sign of anemia- so after that I was given prednisone and it improved; however I seem to have retained some swelling nevertheless. Keep drinking water! Good luck