Symptoms not characteristic of CLL and worked up exhaustively. Sound familiar to anyone.

[Odale]

Bladder problems, lesions and bleeding, which CLL doc believes are not CLL connected. Has anyone had this problem (also fatigue, low white and red blood count, other problems). This has been a real puzzle and my relative is going for a second opinon, but would appreciate any information someone might have. Thank you.

[AussieNeil Partner Administrator]

What kind of bladder problems? Is this where the lesions and bleeding are occurring, or somewhere else?

Fatigue and low red blood/haemoglobin are common with CLL, but I'm puzzled by the mention of low white blood counts unless your relative is being treated? Unless your relative has the SLL form of CLL/SLL or are being treated, their white blood cell count should be high, due to a high lymphocyte count. Bone marrow infiltration can cause neutropenia and other low white blood cell counts.

Neil

[Odale in reply to AussieNeil]

Thanks for responding. His physicians are also extremely puzzled; there are bladder lesions. It may be unrelated to the CLL, but I thought I would ask the knowledgable members of this site about it. Both blood counts have been down greatly.

[Fulart in reply to Odale]

Well now, I’ve got the CLL/SLL version AND I’ve had stage 3 bladder cancer (BC). The only symptom that alerted me to BC was bleeding when I went to the bathroom. That is a symptom that needs to be investigated. It could be due to any number of issues. Your friend ‘s symptoms are not necessarily BC, but they do need further evaluation. When I had a Cystoscopy -a scope inserted into the bladder - they found a “red patch”. The doctor said it could be due to infection, but they had to do further evaluations. They biopsied the red patch. I never had my white blood cells drop. They were rising until I began treatment for BC. Incidentally, I had treatment which preserved my bladder and am now deemed NED - no evidence of disease. By no means am I predicting BC for your friend, or Doom And Gloom. I am questioning what the “lesion” is. I hope that’s what the doctors are pursuing.

[Odale in reply to Fulart]

Thank you for responding. They have vigorously investigated; poor guy has been poked and prodded, as you know. He is on to get a workup elsewhere with this CLL doctor's encouragement. Wish you continued good luck with your treatment.

[claretsauce]

FATIGUE!!!!! This has been an ongoing issue with me, but my CLL doc doesn't seem to take it as meaningful. But it is not like any kind of fatigue I've ever experienced!

[Dew77 in reply to claretsauce]

My doc is the same way. The fatigue is horrible. It feels like I am walking around with the flu. I feel wiped out a lot especially after being too active or pushing myself. I am only 50 and have had cll for a little over 2 years now. My #'s don't indicate fatigue (rbc, hemoglobin) and my doc seems to dismiss it. I will mention it again at my appointment tomorrow and see if anything changes from her stance.

[DaleFL in reply to Dew77]

I am in the same boat.

[Jph02006]

I second the suggestion to get a cystoscopy and if needed a bladder biopsy CLL cells can infiltrate the kidney ( rare) and the bladder(even rarer). This is different than having kidney or bladder cancer but can affect the function of both organs.

[Odale in reply to Jph02006]

Thank you, he has and still investigating.

[Odale]

This is so frustrating for people who have been active and physical in particular. Thanks for responding, and good luck to you.

[livinglifewell]

How awful this must be for you and your friend. The not knowing, the worrying what it could be, the what ifs, and the frustration. I am sorry.

[Odale in reply to livinglifewell]

Thank you for your kindness. It sure does wear on him and those who care for him. True for all of us, I know.

[vog292]

I recently noticed some blood in urine. The CLL nurse said: Not CLL related. The urologist ordered a CAT of lower abdomen scan that showed that enlarged prostate was causing the bleeding, then put me on RX with Finasteride und Tamusolin. ( had prostate problems since decades and unrelated to CLL)

[Odale]

Thank you for responding. They have tested for all this and remain puzzled. Again, the kindness and interest of people on this site really impresses me.