Hello all! Anyone had kidney issues related to CLL? I will do the treatment not because of my lab results but because CLL filled my kidneys with white cells and led my to nephrotic syndrome.
My hematologist is confident that with the treatment they will start to work again because those with cells are gonna disappear from the kidneys.
Kind regards !
Welcome to our Forum!
Do tell us a bit more about your CLL.
Are you on treatment? Have you had treatment?
Nephrotic syndrome can be caused for different reasons. I think it is unusual in CLL. But very important.
What treatment is now planned for you?
Best wishes
Jig. UK.
healthunlocked.com/cllsuppo...
You will get more replies if you lock your post. Use the link above to see how. 😀
Hello. Thank you! This is an amazing forum.
I will talk about my case because i think that it can help others. Besides my hematologist will publish a study about this to help other persons on the same situation.
I went to hospital on 14 January because my feet were starting to swell and I didn't feel very well. They did analyses and other tests and realised that I had nephrotic syndrome.
I was hospitalised for a week and had blood taken every day. I had a kidney biopsy. In the meantime, I started to get thinner in hospital, but the tests showed that there was something else going on.
I also had a bone marrow biopsy.
The tests detected that I had CLL. Meanwhile, the kidney biopsy gave the same result with a huge concentration of white blood cells in the kidneys that clogged up the glomeruli.
My CCL-related values indicate not to treat. I'd just watch and wait. But since CCL, in an extremely rare case, has concentrated in the kidneys, I really must treat it.
I'm going to take Obinutuzumab and then Venetoclax. Twelve cycles for one year.
They're convinced that the kidney problem can be solved with treatment.
Kind regards
Bruno, Portugal
That's a heavy impact start to your CLL journey Bruno.
This IS an amazing forum - and contained within it is much information, knowledge and wisdom. And of course support.
I have searched the Forum for "nephrotic" and only 4 mentions of renal complications. So your situation must be rare.
Do take time to pook at the pinned posts healthunlocked.com/cllsuppo... to learn how to use the Forum best and also a lot of information about CLL.
All questions welcome.
Please let us know how you get on with your treatment.
Very best of luck!
Jig
I do recommend that you "Lock" this post - see the link in my previous reply.
How did they establish that your CLL filled your kidneys with white cells? Did they take a biopsy?
Hello! Yes they did. It was the thing that they did first. Huge concentration of white blood cells in the kidneys that clogged up the glomeruli. It's a very rare case. My haematologist has had patients with infiltrations of the liver and spleen. But the kidneys are the first case.
Not the first case... I was told the exact same thing more than a year ago! I started the O/V treament for my CLL, just because it was revealed in a kidney biopsy that CLL was causing proteinuria. My CLL was diagnosed at the end of 1999 and did not need to be treated yet had it not been for this apparently very rare condition. I am told by my nephrologist that the immunotherapy treatment (Obinutuzumab infusions and Ventclexta pills - 400 mg per day) I am receiving is working and has improved my kidney condition.
Thank you very much for your reply. Exactly what I have. proteinuria. I'm going to take this medication and the doctor is convinced that with this treatment the kidneys will improve. Your reply has helped me a lot because I have hope that my kidneys will also improve. Lots of luck and good health and may everything go well!
Thanks! CLL keeps amazing me with all the stuff that it can cause.
Cll is smarter then us and all these meds.
Not smarter than Chuck Norris though. He never had a NDE. Death had a near Chuck Norris experience 😁. Do you know why Chuck Norris doesn't wear watches? He decides what time it is!
Good for Chuck, Leo
Since I discovered CLL, I've discovered a lot of Chuck Norris. Some who have lived with CLL for forty years and do everything. In fact, meeting people in the same situation helps us understand a lot of things. May we all be Chuck Norris!
I am on another forum where a woman had the same issue. Treatment with V&O was very successful and kidney function returned. I have kidney involvement too but my case is extremely rare. I have immunoglobulin G deposits in my kidneys, normally seen in multiple myeloma. My CLL is a weird clone. Treatment has worked somewhat for me but unfortunately damage is permanent.
Hello.
Yes, my husband had nephrotic syndrome, thought to be driven by the CLL, back in 2015. They started him on FCR and the kidneys went back to normal pretty quickly.
I wish you very well,
Fran 😉
BMFCDRW,
Reading medical publications can be obnoxious, yet, they can also provide insight. If you are interested in some kidney/cll related research, here are two offerings -
haematologica.org/article/v...
ncbi.nlm.nih.gov/pmc/articl...
Healthy kidneys and kidney function monitoring are paramount in cll treatment and QOA outcomes.
That's my story and I'm sticking to it!
Hope you find the information useful, and are able to overcome the condition through informed advocacy.
JM
Thank you very much for taking the time to share these two publications with me. I will read them carefully. In fact, I thought my case was extremely rare, but I've actually come across others. Thank you once again.
In 2019 I got a phone call from my nephrologist at 2AM, instructing me to go to the emergency room immediately. He had just received my last lab results and kidney biopsy and my GFR was 7. Within hours, I had a catheter in my jugular and started dialysis. I was in the hospital for 8 days, getting dialysis every day. White blood cells had infiltrated my kidneys and they were barely functioning. I received dialysis three times a week for about 4 months. During this time I was also getting infusions for CLL, so I spent a lot of time sitting around with tubes in me. I didn't bounce back completely. I am now a stable stage 4 with GFR of 20-24. It doesn't really affect my daily life, although it can affect how I process medications.
Wishing you the best,
Kris
Hi. Sorry you're suffering such edema - you've been on diuretics / 'water pills' such as furosemide, to help reduce fluid retention?
Have your doctors also told you to reduce fluid intake? - solely to improve comfort..
What volume is your fluid intake?
Also, have you moderated your salt intake? - also to influence water retention.
I had the same caused by malformed gamma globulins - caused by the tumour CLL cells; that is, mine wasn't infiltration of CLL cells in the kidneys, but gamma globulins made by them.
The outcome of treatments tend to be rapid, since debulking of CLL cells helps comfort.. but the kidneys are a variable; the glomeruli may be scarred or otherwise damaged.. it takes time to see how much they will improve.
I continued on steroids through 2 months of treatment , tapering (reducing) dose down to zero.
Query your doctors on fluid intake:
Whilst today, pre treatment, you could reduce fluids, tomorrow onwards with treatment they likely want some important minimum level of fluid intake.
Good luck. That edema sounds ultra uncomfortable - favourite shoes don't fit, self-image/esteem takes a hit.. that should change rapidly.
My doctors forgot to tell me to reduce fluid intake with furosemide prior to treatment.
Best of luck.
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