Strong Smelling Urine: I have been noticing... - CLL Support

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Strong Smelling Urine

Loweez profile image
14 Replies

I have been noticing strong smelling urine and I’m wondering if this can be CLL related? I drink tons of water and green tea and never had this before. I don’t have a urinary tract infection. Not on antibiotics. No asparagus lately( lol). This is so weird as I have never had strong urine before. I am on w/w so no new meds. Any insight would be appreciated. Thanks!

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Loweez profile image
Loweez
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14 Replies

It could possible be your diet... Cll is slow progressing but one of the primary things it affects is your lymphatic system, over time as the disease develops further it will make the job of clearing your body out of waste more difficult so if you eat a poor diet with sugar and fast food even a few times a week it can be a potential reason.

If you haven’t already try cutting your diet down to just fruit vegetables water and chicken for a week or two and if it helps you can add foods back in slowly and you’ll be able to identify the possible cause.

Stuart

Loweez profile image
Loweez in reply to

Thanks for responding. I eat mostly vegetables and rarely eat anything with sugar except a frozen yogurt pop each night. I don’t like meat in general so I get my protein from Greek yogurt, lentils, an occasional egg, fish, etc. I will have a burger on a rare occasion. Fruit is usually berries. I will monitor this newer phenomenon and if it continues I will mention it to my doctor.

AussieNeil profile image
AussieNeilAdministrator in reply to

I think you may be confusing lymphedema: en.wikipedia.org/wiki/Lymph... with what CLL does to the lymphatic system, which is restricted to node and spleen enlargement, not thankfully drainage, or we would be looking like that unfortunate individual in the Wikipedia article. Thankfully CLL cells are small (which is why the SLL in the lymphoma presentation of CLL/SLL is known as Small Lymphocytic Lymphoma). They rarely impede circulation, which is why we can reach extremely high lymphocyte counts in our blood without concern.

It is still worthwhile exercising to ensure we do get good lymphatic circulation, however and eating a healthier diet is always worthwhile. It's frightening to see how much sugar per capita has increased in the Western diet over the last 100+ years.

SeparatedDMC60 profile image
SeparatedDMC60 in reply to

Thanks for information!

Good to knw....I hav alot of issues in that area..had colonosopy too I'm completely clear...thank god...I take vit B12 /iron /vit D3 /1,000mg of fish oil too..recently been on CBD OILS 250MG.DROPPER MORNING AND ONE AT NITE! !!

Jillinill profile image
Jillinill

Loweez, I had the same issue. My diet is free of added sugars and takeout foods. We eat healthy home cooked meals consisting mostly of fish, chicken, veggies, berries, yogurt fruit smoothies and occasional burgers. For over 12 months before treatment started, my urine was very strong smelling which was very unusual for me. I had high ALC in the 100 to 220 range and wondered if that could be related.

It completely disappeared very shortly after I started ibrutinib TX 18 months ago. I've had a couple UTIs in the past 9 months but that odor never returned. Doctors and nutritionists just shrugged without ideas of what might have been the source of the odor, though obviously related to CLL. Hope your doctor can help to determine the cause for you.

Loweez profile image
Loweez in reply to Jillinill

Thanks so much. I feel it is related as well.

Redlion profile image
Redlion

Hi Loweez, I also noticed this and like Jillinill it disappeared soon after starting starting treatment with Ibrutinib. I cannot really remember when it started but it was certainly a number of years prior to treatment. I did a search around in an attempt to see if it was CLL related but could find nothing to confirm this, my haematologist gave me a blank stare and shrugged his shoulders when I asked him about it, however I believe it must have been as I had no significant change to my diet to explain it. I would say it is not something to worry about though. Good luck.

otonal profile image
otonal

Had blood sugar levels checked?

Loweez profile image
Loweez in reply to otonal

Yes. I am diabetic but my blood sugars have been controlled for years. My A1C is down to 5.7.

zaax profile image
zaax

It can depend on what your are eating. ie red / dark urine can equal blood or beetroot.

W00dfin profile image
W00dfin

Don’t overlook bladder problems. This can be a symptom of the bladder not emptying completely.

ladyprescott profile image
ladyprescott

Hello...I had that for a while within the last few months and it went away on it's own. I know what you mean that it can make one wonder if something else is going on. I also drink a huge amount of water a day. Keep doing what you're doing and if it doesn't stop, call your GP for a consult. My best. Carole

Loweez profile image
Loweez in reply to ladyprescott

Thanks Carole for the advice.

Latitude38 profile image
Latitude38

I too have noticed ( as well as other people) a strong odor in my urine this year . When I was in the hospital,I mentioned it to the Dr ( a blood specialist) he told me I was dehydrated,which made sense to me ,I drink few fluids in the daytime hours .At the time my urine was cloudy tree bark brown ,which I hadn’t had prior to being seen for pneumonia. I also had pain in my right side below rib cage that is somewhat painful and unbearable. Since my release and diagnosed with CLL ,I drink a ton of fluids my urine color now goes to completely clear to slight yellow also medium yellow the range can be anytime if the same day,however the smell remains .At times my side hurts minimum of once a day that seems to sap my strength. I could be classified I suppose as leading a unhealthy life style including diet and sweets . Since I have for the most part had these habits for as long as I can recall,so I don’t believe changing diet habits would change the urine odor .It must be something else ,of which I have no clue hoping perhaps you might have found something else for this embarrassing issue .Hope all is well best regards

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