Diagnosed with chronic lymphocytic leukemia: What can I do?

I was diagnosed with CLL as well. I am wait and watch. Regular blood work shows very slow progression here. Thats good.

I, too, am in the watch and wait stage and hope it lasts for many years. Seeing my oncologist tomorrow following blood work last week.

Hello, to this group! CLL has been my companion since 1996, so you can see I have learned to live with it. Only 3 times during those years has my white count climbed high enough to cause the oncologist to give me an oral chemo to knock it back down to a more normal range. Frequents blood tests during the period are required to monitor carefully (mine went down rapidly). As my initial oncologist told me I would probably not die of CLL, but die with it unless I had a serious disease & my immune system could not fight it. BTW, I have had Covid twice and recovered, so not to fear. Now at age 81 I have a new bump in the road called neuroendocrine cancer with a tumor in my liver and my CLL isn’t even affected so it is stable! Hang in there, everyone!

@jimroscoe, welcome. I hope you've seen the helpful posts by fellow members @nana120 @normahorn @dringge. Here's a related discussion that you may wish to review where members @gerryk @carl50 @hababeck @pokeyspride2002 share their experiences to:
- CLL - newly diagnosed https://connect.mayoclinic.org/discussion/cll-newly-diagnosed/ With

The term "chronic" in chronic lymphocytic leukemia comes from the fact that this leukemia typically progresses more slowly than other types of leukemia. For many diagnosed with CLL, watch and wait otherwise known as active surveillance is the recommended treatment. This article explains:
- CLL: What is 'watch & wait' and what can a patient do during this phase? https://connect.mayoclinic.org/blog/hematology/newsfeed-post/cll-what-is-watch-wait-and-what-can-a-patient-do-during-this-phase/

What have your doctors shared with you about your diagnosis, its stage and treatment options?

Recently diagnosed with CLL and in the “wait and Watch” period 61 years old and not having any symptoms blood work came back great during recent physical and feeling great. It was discovered during a CT scan for a case of diverticulitis. I was shocked when the doctor mentioned a possibility of cancer. Had a lymph node removed for testing and here I am.

Early stages “wait and watch” program. Need to work on diet and exercise. Sent me to get updated on vaccines and another full CT scan for a baseline. In addition, wants me to have blood work every 3-months for now and see how I do if my tests show I’m stable then he would move my testing to every 6 months.

Hello fellow CLL survivors! On my 80th birthday I was diagnosed with CLL. I did the watch and worry year also, and ultimately went into treatment (targeted cell therapy) which is not chemo. It’s a daily pill for a year and 9 infusions within that year. I felt good during that treatment year and continue to do so. So I’m considered in remission for the last three years and hope that this continues. Good luck to you all!

Welcome to Mayo Connect @janicegoe23 and @otto2023
Janice, I had to giggle a little with the “watch and worry’ instead of watch and wait. ☺️ Anyway, you both have been handed a diagnosis of Chronic Lymphocytic Leukemia and I know you had/have a ton of questions. It can be frightening getting a diagnosis like this because it feels you’re waiting for that ‘other shoe to drop’.

@otto2023, CLL is generally slow to progress. Some people can go for years without noticing any symptoms and when that happens there are highly effective treatments to protect your quality of life. I have a younger neighbor (in his late 30s) who’s had CLL for over 10 years and in active treatment. He just finished a marathon!
Your doctor is having you get your blood work every 3 months to watch for trends and to track any changes that might be present. This sets a solid baseline for monitoring your condition.
I just wanted to bring your attention to this post from @janicegoe23 in case you hadn’t seen it. She shared her story of CLL and the treatments she received and is now in remission for three years. I hope you find it encouraging. https://connect.mayoclinic.org/comment/945771/

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This article might be helpful for you as well: https://www.verywellhealth.com/chronic-lymphocytic-leukemia-7551732
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@janicegoe23. Thank you for sharing your experience with the treatment for CLL. These targeted therapies are amazing, aren’t they? Positive stories such as yours offer hope and encouragement to so many other people who are going along that same journey. Congratulations!
How often do you have blood work done for a followup?

Up to this year I was having labs done every 6 months...now yearly.

Awesome to hear you’ve been in remission for 3 years!!