Stage IIIA kidney failure: Hello group! Thank... - CLL Support

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Stage IIIA kidney failure

loveRicky profile image
6 Replies

Hello group! Thank you all for your responses. I read each response carefully and have been scheduling appointments. My next question: Is it possible for CLL to cause kidney failure (Stage IIIA), but still with the patient being on watch and wait? If that was determined, would treatment be recommended? I looked back at my bloodwork and my kidney failure began after the CLL diagnosis. I am sorry to be asking all these questions, the more time wasted....the more damage done.

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loveRicky
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SofiaDeo profile image
SofiaDeo

CLL can occasionally infiltrate other organ systems, and treating the CLL helps if not cures the problem. But you've said you also have Waldenstroms Macroglobulinemia (WM), and that your doctors think your kidney problems are related to whatever agents used to treat that problem.

I am reading that ibrutinib is used to treat WM, and it's also used in CLL. I don't know if your cardiac problems include arrhythmias, which may mean ibrutinib would not be a "first choice" recommendation.

I'm also reading about a rare instance of cold agglutinin disease depositing IgM proteins in the kidney, causing damage.

If you haven't had rituximab, that drug is also used for WM as well as CLL.

Both of these drugs are considered "targeted therapy/immunotherapy" and are not standard chemotherapeutic agents.

Skin problems are associated more with WM than CLL. If it's been a decade since you had the WM treated, how have your docs ruled out a resurgence of that? There are newer agents, not standard chemotherapy, available since your last treatment. A few also treat CLL.

loveRicky profile image
loveRicky in reply toSofiaDeo

Thank you ALL for your replies regarding CLL and kidney failure. I am scheduled to have more bloodwork done in April. The last results were: Creatinine: 1.67. Urea Nitrogen: 32 and eGFR: 29. I have my first appointment to see a CLL specialist at Penn who has a satellite office in Cherry Hill , NJ, on April 21st. I am very anxious to meet him and, more importantly, hear what he has to tell me. I, like many of you, consume 60 to 80 ounces of water per day, including some herbal tea (without sugar). The diuretics, I use with digression. I have bumetanide, 2mg...take 1 tablet my mouth every day. I have furosemide: 20 mg...take 2 tablets by mouth every morning. So, this is how I base my decision on what to take and when. I always have more swelling in both legs/feet once the weather gets warmer. The only time I really swell in the Winter is IF I sit in one position too long without my legs elevated, which I obviously try to avoid doing. As you know, I have the lymphedema issue, the left leg being the worse. My thinking and my family doctor agrees: The swelling in that leg is NOT water, it is lymph fluid, so why would I take a water pill that would make my kidneys work harder, when the diuretic will not remove lymph fluid? Since I have joined this group and I am so very glad I did, I have learned much and will go prepared with a written list of questions. I remembering questioning my hematologist/oncologist about the kidney results. He asked me if I am urinating on a regular basis. I told him yes, so he told me not to worry about the numbers. I told him the frequent urination was from what I thought might be uti's. I do NOT have any pain when passing urine, but I ALWAYS feel like I must pee and normally pass a small amount of urine. He told me I worry too much about the numbers and that again, the uti's come with age. So, EVERYTHING I experience seems to "come with age," which makes me afraid to ask any questions for fear of sounding like an "old" fool (which I guarantee you...I am NOT). I have stated this in some of my previous posts. I know my own body and I know when something isn't right. I just want a doctor to be able to tell me .... this is what I think it causing the symptoms and let's see what we can do about them. Regarding the Waldenstroms, my blood work shows no "M Spike," which is what I had with WM....All paths now lead towards CLL. Hope everyone has a great Sunday and, again, THANK YOU ALL, for caring enough to respond. I have been blessed with this site.

Jm954 profile image
Jm954Administrator

The size of the IgM protein produced by WM is large and does cause problems for the kidneys if the level gets too high. I would ask your doctor if the WM could be the cause and yes, treatment for it would help your kidneys to stabilise.

Jackie

Mango357 profile image
Mango357

Hi Ricky:

I am currently on Brukinsa. My kidneys do hurt at times recently but I have noticed that the pain recedes when I consciously increase my water intake to flush them out. Two cups of water is not enough even if I have had other beverages all day. A little fresh lemon, cranberry or apple cider vinegar in water helps with that sort of thing but do speak with your CLL Specialist.

Phil4-13 profile image
Phil4-13

loveRicky, I have been diagnosed with 3A chronic kidney disease. I have never been told "kidney failure", that's 2 more stages away and I don't wish to go there! My nephrologist told me at 76 yrs. "Young", my current kidney status is not unusual. I'm glad to be aware of it and definitely do all I can to maintain as healthy a set of kidneys as possible. Since I started Brukinsa this past December 2024, I have been conscientious of drinking WATER more. I'm 110 lbs, 5 feet(just barely🥴) and I push for 60 ounces of filtered water every day. I wish you improved health and a much enjoyed life. 😊Sandra

Bluesinthenight profile image
Bluesinthenight

I am not aware that CLL per se causes kidney failure. But other problems or complications associated with having CLL such as a serious infection, dehydration (volume depletion), impairment of kidney drainage by large lymph nodes compressing/obstructing the ureters, or other metabolic problems such as too much calcium in the blood (hypercalcemia) can impair kidney function. Hyper IgM disease and Waldensrtom's disease can cause a problem with the kidney glomeruli if IgM levels are very high. Also, having repeated CT scans with IV contrast while being dehydrated can impair kidney function, so checking kidney function before IV contrast is very important, as is staying well-hydrated before and after these contrast scans.

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