Saw a post regarding drug that might have to be taken "forever," IF kidneys are an issue.
My question: Are there treatments out there for CLL that will NOT have much impact on my current kidney failure OR will I be very limited as to what would be recommended?
Thank you.
Hi loveRicky,
You are asking an excellent question, and probably need to discuss this with a CLL expert hematologist to confirm my vague memory of the details (I have no medical training).
I believe that any fast kill off of CLL cells puts extra loading on the kidneys. And also the (excess unused) BTKi drugs (ibrutinib, acalabrutinib, zanubrutinib and pirtobrutinib) are removed from the body through the kidneys. But the excess drugs of BCL2 class (venetoclax) is removed via the bowels (feces).
So there is a conundrum- the BTKs (acalabrutinib) don't cause a fast kill of CLL cells, but do put a steady, long term load on the kidneys. The BCL2 (venetoclax) are known for fast kills of CLL cells but then have a reduced long term load on the kidneys.
Please check this out with your CLL expert or a PharmD pharmacist familiar with the drug pharmacokinetics / pharmacodynamics of these modern targeted drugs.
(Pharmacokinetics (PK) is the study of how the body interacts with administered medications for the entire duration of exposure . This is closely related to but distinctly different from pharmacodynamics, which examines the drug’s effect on the body more closely. This field generally examines these four main parameters: absorption, distribution, metabolism, and excretion (ADME)
Len
Thank you so much, Len. You provided a good bit of information. I will check it out with a CLL expert. I am hoping and praying it won't prevent me from having some form of treatment.
Allopurinol and Rasburicase are treatments that protect the kidneys and your doctor will be aware of them, just remind him about your kidneys!
Jackie
Thank you ALL for your information regarding your experience(s) with kidney failure. I am still waiting for the results of my fat pad biopsy that was done on February 27th for Amyloidosis. I often wonder, did my previous chemos (bendamustine and rituxan) for Waldenstroms affect my kidneys OR can CLL affect the kidneys also? I am praying the results for Amyloidosis will be negative. Feel like I have so much to deal with. I wanted to add, I read where a member had the aortic knicked. Brought back painful memories to me....Diagnosed with WM in 2012. In 2016 I had my aortic valve replaced with a pig valve via TAVR due to agglutinins. I remember waking up afer the implant with horrific pain on my chest. I actually yelled....I am dying!!!! Next time I woke up, there was a big white tube coming out of my neck going into a mason type jar collecting blood. Thank God the anesthesiologist was in the room when I woke up!!! Apparently the cardiologist knicked the sack around my heart when he was withdrawing the instrument he used for the implant. The sack was filling up with blood which created the horrible chest pain. Wish I could remember the medical term, but I can't. So glad God wasn't ready for me yet. Again....thanks to all who responded...very much appreciated.
I am in the middle of “discovery” for this topic right now. Have some minor heart issues that are being checked out and also some minor kidney issues. My GP has said it is stage 1 kidney disease. Numbers are only slightly out of whack, but am having some swelling and water retention. I was also having shortness of breath, palpitations, etc. Echocardiogram shows slight reduction in function of left ventricle. My CLL specialist referred me to a Cardio Oncologist in the same system. They work together closely. I saw him on Friday and came home with a monitor for 72 hours and am having a Stress MRI done on 19 March. Cardiologist thinks it might be related to long term usage of my Ibrutinib. Even though I am in a reduced dosage, I have been on it for over 7 years. I was on the Captivate trial and am still on a Static trial now. I still drink my 80 oz of liquid every day even though I am only on 140 mg of Ibrutinib daily.
My hubby has stage 2 chronic kidney disease and the Expert CLL Kidney Dr stated as long as there no protein in the kidneys his kidneys will not deteriorate. Also there is a new protocol regarding taking semaglutide to help the kidney function- if ever kidneys begin to deteriorate- please ask your CLL Dr
Great question
Both times I was approaching treatment, 2018 and 2023, my kidneys were deteriorating. After starting FCR in 2018 and V+O in 2023, i saw dramatic improvement
Good luck and God bless
Skipro
CLL Progressing To Next Stage 
CLL, Ibrutinib and kidney filtration
Newly diagnosed too, stage 0
acyclovir and kidney care
