Ibrutinib/ Venetoclax Trial: Have now completed... - CLL Support

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Ibrutinib/ Venetoclax Trial

SueKRM
SueKRM

Have now completed 10 months of the Ibrutinib Venetoclax trial and my white count is now 4.3.On the whole have been ok apart from an onward going problem with cystitis. Wondered if there was anyone else on the same trial and how they were doing.

5 Replies
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Jm954
Jm954Administrator

Hiya, which trial exactly is it you're in and in which country? Was the cystitis a problem before the trial?

SueKRM
SueKRM
in reply to Jm954

Hi I'm in the UK and am on the Clarity Trial. I had a bout of cystitis 2 days before the trial started .Up to that point hadn't had it for years. Now getting it every month or so.

Jm954
Jm954Administrator
in reply to SueKRM

I'm not aware of any connection and many people on Ibrutinib get less infections. Please make sure your doctors are aware.

Best wishes

SueKRM
SueKRM
in reply to Jm954

Hi Thank you. My doctors are very aware of the problem. Apparently the infection is e-coli which they tell me is quite difficult to get rid of. E-coli likes an acidic environment and apparently ibrutinib makes the urine more acidic. They won't let me use D Mannose which I've read is good for getting rid of e-coli urine infections because of drug interactions.

I am on the trial and been doing well so far. It is the same type of trial but are used to San Diego. I have become neutropenic a couple times but it's not a big deal because they just give me a shot and my neutrophils come back up. My nails have gotten a bit weaker so I take biotin which is supposed to help but it takes a long time. My white blood cell count is around 2. It goes up when I have a shot for neutropenia. I've had a few mouth sores as well. I put some Teatree oil on my toothpaste and that helps. Not too much since it's very strong. I also gargle with mouthwash.

I am nine months into the trial.

Sorry about your condition I have not had that.

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