Anyone have chronic lymphocytic leukemia (CLL)?

Hi I am new to this and I just saw on some doctor's papers that I have CLL. Am due to go to hematologist in November but can anyone give some heads up what I can do to help myself before then? I honestly am in the dark. I have read some information but am having difficulty understanding it!

I was diagnosed with CLL when I was in the midst of 8 months of sinus infections. Two weeks after getting off an antibiotic, I had another infection. I was on antibiotics for MONTHS. After my routine blood tests, my PCP sent me to a hematologist/oncologist who diagnosed CLL and decided that my repeated infections were because of that. Like minnesotajim, I also receive IVIG infusions (mine are every 4 weeks), but I think they will end soon. I was certain that my elevated white blood cells were due to the sinus infections. However, the oncologist thinks that the CLL caused the sinus infections. Since my sinus surgery and the IVIG infusions, I have not had any sinus infections for months. Good luck!

Infections, especially sinus infections, are common because anyone with CLL has a weakened immune system. See an ENT doctor who understands CLL (I have one at Mayo). Also discuss with a CLL expert. I use twice daily NeilMed nasal rinse with prescribed steroid and antibiotic—completely controls the sinus infections. If your immunoglobulin IGg level is low, you could benefit from IVIG infusions (I receive one every three months).

Thanks for the reply. Mine was found in a one off test while I was hospitalized for something else. It’s only been 4 months now since diagnosis and I’m still learning about what effects this has. Thank you so much for taking the time to reply. I really appreciate everyone’s “community spirit” and patience. Hope you are doing ok.
Tim

Tim, I have had CLL for 12 years ( I am 82) and it was diagnosed due to repeated pneumonia and sinus infections. White blood cells key to recovering from infections. I have had minimal treatment - did take immunoglobulin infusions monthly for a while to boost immune system. I have lived with minimal CLL intrusion into my life. Hope you get answers to your questions.

Is it normal for colds and infections to take longer to get past? I haven’t started any type of treatment - find out in two weeks if it’s a start or hold and see. But man, I’ve had a sinus infection for three weeks now. Not just a cold but antibiotics for three weeks trying to get over this?

Just trying to learn what’s normal and attributable- seems like the three months between appointments digs up lots of unknowns and questions.
Tim

My maternal grandmother died of leukemia at age 58 when I was two years old, but I have no idea what type. So that's been a question in the back of my mind.

Hi @marytheresacll. Worrying about our children is a chronic disease! I think we parents all suffer from that one. We tend to worry about things that haven’t yet happened or might not ever occur.

After reading through several articles on CLL, to see if it’s an inherited disease, here’s an excerpt from Healthline.com:
“Genes passed through families seem to contribute to chronic lymphocytic leukemia (CLL) development. Although a family history increases your risk, most people with this history don’t develop CLL.” “Inherited mutations are rarely thought to cause CLL. Genetic changes linked to CLL usually occur during your lifetime.”
https://www.healthline.com/health/cll/is-cll-hereditary
So I guess there’s a slightly elevated risk level but it’s not a certainty that any of your children will develop CLL. Keeping in mind they inherited 2 sets of genes. ☺️
What your children can do is to have routine blood work, such as a CBC with differential, to act as a baseline. Then subsequent results can be compared to watch for trends in numbers. There’s also genetic testing if they want to go to those lengths.
But the bottom line is, none of us can predict the future and worrying about ‘what ifs’ will just rob us of precious time.

Good morning. Well maybe a coincidence but both of my grandfathers had leukemia and died from it and I do not have any information as to what kind of leukemia, nor do I know if they distinguished the differences back then.
I was diagnosed in December 2021 with cll, started treatment in April 2024. Now my brother in Australia who is 61 has been diagnosed.
So, is it genetic? It does make me worry for my children.

Hi @susue! Thought I’d drop in to see if you learned anything new from your appointment with Mayo hematology. From my own experience with the team from Mayo Rochester, I’m expecting your doctor took their time to listen and to answer your questions. ☺️ Were you able to get a firm diagnosis?