My doctor says I have CLL

[Llgarden]

Twice I had a UTI. First UTI my WBC was 9.6. About a year later my WBC was 11.1. On 6-10-1920 my Leukocytes was 10.8 and my Lymphocytes was 44.5. Doctor says to wait and watch. I feel normal. What should I expect next?

[Llgarden]

Sorry I meant 2019😂

[Sushibruno in reply to Llgarden]

Lol, i said 1920? 😂

[GMa27]

I felt great for 12 years on W&W (watch & wait). Hopefully you continue to feel fine and just get ur check ups. Suggest you get second opinion if treatment is mentioned. 💕

[cllady01 Former Volunteer]

LIgarden, have you read the following post "Newly Diagnosed or Just Found Us? This Post is for you!

There is a lot of information that will help you to find your way through, but you will find answers to questions you have now as well as to questions that will come later as you learn more about your specific CLL profile.

We all have CLL, but all our CLL is not the same, yet we are a good mix of experiences and knowledge as well as efforts to find information and to definitely support each other. Let us hear from you as you want to do so. We are eager to learn and share. You will be teaching us before you know it.

healthunlocked.com/cllsuppo...

[lankisterguy Volunteer]

Hi Ligarden,

Please look on this page (right column on computer screens, scroll way down on mobile devices) to find two boxes "Related Posts" and "Pinned Posts". Lots of excellent reading that should answer many questions.

Len

[michaelmac]

Hi

For CLL you have come to the right place ,lots of very knowledgeable people here, ,, not necessarily counting me.

Your test UTI =urinary tract infection???? ,,,if that the testing you are going from there are a couple of things you MIGHT think of doing

Find a hematologist ,,, for me ,,,,preferably at a cancer treatment facility associated with a University ,,,,,, check NCI has a list by the state...

They will take care of running the right tests.

Don't get to worry about the C (cancer) word in CLL ... lots of people go on Watch and Wait for years and years

Good luck and good health to you

m

[Llgarden]

Thank you

[TimHB]

I always strongly recommend to everyone newly diagnosed that they get a second opinion ASAP from a CLL specialist - not just a hematological-oncologist generalist. This made all the difference for me and may have saved my life. The hem-onc who diagnosed me in Los Angeles (who's one of the best) said I was Stage 0, "probably" mutated (good), and could watch-and-wait. But he also recommended a second opinion from a CLL specialist and provided a referral to one of the best - Dr. John Byrd at the James Cancer Center in Columbus, Ohio. Turns out I was, in fact, Stage II, UNmutated (bad), and in need of urgent treatment. He recommended me for a clinical trial at UCSD in San Diego and, 18 months later, I'm doing great. If a contractor told you your house needed a new roof, wouldn't you get a second opinion and shop around? Why not do the same with your health?

[Durachok]

Besides finding and establishing with Hematologists please also find a good Urologist and ask for Cystoscopy of Bladder. CLL can attac the bladder lining ( my case) and need to be treated rather than W&W

[TimHB in reply to Durachok]

That happened to me too.

[Durachok in reply to TimHB]

I should note that since I’ve started on Ibrutinib over a year ago my bladder issues are getting better. So CLL in bladder is a real thing, though all my doctors (hematologists and urologist) told me that they’ve never saw this before

[TimHB in reply to Durachok]

Interesting. For me, a cystoscopy showed damage to the lining of my bladder which my urologist blamed on the ibrutinib. Said it's a common side effect of cancer treatments. Offered a number of treatments for it, all seemed worse than the symptoms so I opted to tough it out. So far so good.

[Durachok in reply to TimHB]

I believe I mentioned before that I was on W&W for 10 years and about 7 years ago I started having bladder issues. 5 urologists later, after TURP and dozen cystoscopies, the pathology finally was definitively about CLL "wrecking" my bladder lining. That what started me on Ibrutinib and it is working its path. The symptomatics very painful spasms went away. Lately I'm not passing the bloody flaky tissue any more. And urgencies and frequencies of urination became more manageable. So in my case, Ibrutinib is working for me and healing my bladder which was confirmed by most recent cystoscopy

[LovecuresCLL]

You may be getting frequent bladder infections because CLL can make you immunocompromised and prone to bacterial infections of the bladder and in my case , my skin (ie cellulitis).

If you get frequent Urinary tract infections you need to make sure your doctor CULTURES the urine to see what antibiotics ....the bacteria in your urine are SUSCEPTIBLE to. The current “shotgun approach” to prescribing antibiotics without figuring out which organism is present by culturing your urine is poor medicine in my opinion,

Most of the time it’s E. Coli in the urine .....

Cranberry juice is excellent to keep away bacteria in the bladder naturally.

Stay hydrated too and watch your wiping practices and never wipe from back to front. E. coli is abundant in fecal matter so I think you get my drift.

Also bladder can get contaminated during intercourse “honeymoon cystitis”.

Good idea to urinate after intercourse to flush out any bacteria that have made their way into the bladder.

[LovecuresCLL]

Oh yes before you read my thoughts about UTIs . Welcome to this site and stick with the gang here. Everybody is generously trying to help each other.

Best wishes and welcome 🙏

-John

[Llgarden in reply to LovecuresCLL]

Thank you. I want to thank everyone. Everyone is so kind.

[Corkyrissa]

I take cranberry pills and have had no problems. I was getting Utis every 3 weeks. Good luck. 🙏❤️