Anyone have chronic lymphocytic leukemia (CLL)?

@hikerny, I hope you've been following all the responses to your call for finding others who have been diagnosed with chronic lymphocytic leukemia (CLL).

I look forward to hearing more about your journey. When were you diagnosed with CLL? Is this a new diagnosis? Will you be having treatment? How are you doing?

Good morning, Pat. Your doctor sounds like a ‘keeper’! It makes such a difference when you have a doctor who takes the time to explain the situation, answers questions and gives reassurance that you’re on their radar should something pop up. My oncologists/hematologists are like that too. I think their understanding and concern gives us the sense that we’re free to move forward, to enjoy our lives and to not focus on the diagnosis. We’ll be taken care of ‘if’ anything needs tending in the future.

Are you still feeling experiencing the chills you were having?

Thank you I have CLL and the Oncologist spent an hour explaining that I’m ok and not to worry as it is slow growing and need no medication etc..will check my blood work and keep a watch on me…
I know how you are helping me and others do I thank you !
Pat Lepkowicz

Thanks for the link. I think it is good as a cautionary warning but too many unknowns and too small group to draw accurate conclusions.

Welcome to Connect, @jerseyjim13. I think most everyone worries about developing the big “C” at some point in time, me included. CLL, chronic lymphocytic leukemia, statistically remains one of the more treatable forms of cancer. As you’ve already found, many people who develop CLL don’t require treatment for several years and when/if they do, treatments have a high rate of success.

Very well health.com
https://www.verywellhealth.com/cll-prognosis-5211991
Hopefully you’ve read through some of the positive comments in this current discussion you’re following. More conversations can be found by typing in CLL in the top search bar. I’d posted this comment a couple days ago to newly diagnosed CLL member @hikerny. It’s filled with other links for information and discussion topic.
https://connect.mayoclinic.org/comment/1277732/
As for worrying about the future?! Whether we have cancer or not, none of us can know what our future holds. So make the best of every day that you’re on the planet and try not to dwell on ‘what if’ thoughts.

One of my favorite quotes (unknown author):
Fear does not stop death. It stops life.
And worrying does not take away tomorrow’s troubles.
It takes away today’s peace.

So try to focus on enjoying your life and living each day to the fullest. ☺️
How frequently will you be having lab work?

I was just diagnosed on Tuesday, 4 days ago. The big "C" has always been a fear of mine and now I have to worry about the possibility of increasing cancer in other organs. Now that really scares me even though CLL is at the early stage and needs no treatment at this time. That means I have to worry about the future.

It is highly possible that I misread this abstract. I will let you read it yourself and see if you draw the same conclusion that I had.
https://pubmed.ncbi.nlm.nih.gov/32407752/

Double thanks as I have dry eyes, as well. Since I learned that I’m allergic to dust, no eye infections but more incentive to keep up my nightly eye routine.🙏🏾

You might want to discuss with your oncologist what to be alert to with regard to immunity. I am beginning to track down one item now. I was given a script and sample packs by an ophthalmologist of an eye drop that is an immunosuppressive agent. Thankfully I did not fill the expensive script until I saw if the sample packs of drops help. Now to check with my oncologist if they do help with "dry eye". I had come across a study that the life expectancy if someone with CLL gets an eye infection is measured in months.

The difference is that before, I ignored people when they said I pushed myself too hard. I didn’t listen to the fatigue or them. Now, my question to those of you who have been dealing with this for a while, does it make a difference to rest or is there no telling what causes the stages to advance?