Acute kidney failure - creatinine is climbing - CLL Support

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Acute kidney failure - creatinine is climbing

spi3 profile image
spi3
7 Replies

My hubby's treatment is venetoclax and acalabrutinib (he previously had obinutuzumab too). He is also taking sulfameth trimeth (for ammonia) and valacyclivor (for shingles) dropped from 1200 to 800 mg a day. We just saw a Renal Specialist Dr and she said that they really don't know the full extent of how the O,V and A works on the kidneys but the sulfameth trimeth does also affect the kidneys leaving crystals in the kidney. She suggested a liquid brand that won't affect the kidneys. Question- has anyone experienced the decline of their kidneys and what did you do,? We are see my hubby's medical team and I'm going to ask them too.

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SofiaDeo profile image
SofiaDeo

Without knowing where you are geographically, it's hard for us to offer comments; please consider putting the country in you profile so it shows up next to the name.

I am guessing the sulfameth trimeth is for pnemonia prevention, not to do anything to ammonia levels. It can accumulate during kidney dysfunction. I am also guessing the "liquid" the doctor is talking about is a totally different drug, atovaquone. If your husband needs PJP prophylaxis protocol, the latter is commonly used in place of sulfa/methox.

If there are any more meds he takes affecting kidneys, these may also be adjusted. It may be wise to consider a "renal diet" temporarily; you can ask the docs/a nutritionist about this, and if/to what extent this may be desirable.

Some people have stresses on liver & kidneys while CLL cells are dying. I hope this is just a temporary thing & will be over soon! Although your post is titled "acute kidney failure" I hope this isn't actually the case, and that any creatinine rise soon reverses. Even if it is diagnosed "acute kidney failure" that doesn't automatically mean it's permanent.

spi3 profile image
spi3 in reply to SofiaDeo

Ty so much and we are at Dana Farber, Boston MA. My hubby has a small cyst in his kidneys and the urologist suggest we see a Renal Specialist for prevention care and this was the 1st time we saw her - so ty so much for your advice too my hubby's creatinine came down also!

SofiaDeo profile image
SofiaDeo in reply to spi3

It's frustrating/scary when labs jump around a bit, but IMO with him being seen at Dana Farber, he's getting great care. They are very experienced, and have many of the best tools to deal with any problems/bumps in the road that may come up during treatment.

spi3 profile image
spi3 in reply to SofiaDeo

Yes it's scary but this is why I love and appreciate this community and folks like you that share in our experiences and also gives us hope - God bless you and everyone- ty!

mickimauser11 profile image
mickimauser11

I had kidney failure during Ibrutinib Obinutuzumab and Venetoclax treatment. I think CLL cells caused an inflammation and the antibiotics contributed to it as well. I was on dialysis for 4 days kidneys only worked 5%. Prednisone therapy helped. Today my kidneys are back to a normal function and the nephrologist couldn’t believe it because this hardly ever happens. Wishing you all the best. My antibiotics was Cotrim which supposedly is not good for the kidney function also. But I was taken off therapy too because they found out I was uMRD already . This was January 2018 .

spi3 profile image
spi3 in reply to mickimauser11

You have given us hope - so glad for you too - ty

BMFCDRW profile image
BMFCDRW in reply to spi3

For me too I have the same problem! Wishing all the best!

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