Chronic lymphocytic leukemia (CLL): How do you manage side effects?

@rip Hi Ron, it’s been a while so I thought I’d drop in to see what you’ve been up to lately. I hope you’re having some improvement since we last chatted.
Are you able to get out for walks with your cute little dog?
The neighbor’s little golden is growing and, OOOeeee, that face is gonna get her out of a lot of trouble! LOL. So cute! But she’s headstrong and already at 12 weeks finding ways to test patience. She’s also found she can escape her yard and somehow get past our other neighbor’s fence into the pool!! She love taking laps. Should be a summer filled with drama. Ha ha

Write when you can...thinking of you. Lori.

@sirbob Hello Bob. I am Nancy, another Mentor on Connect with my own “Welcome” to you. You made me smile. Your self introduction started with words, “I gave up”, then you proceeded to tell us how you did everything BUT give up. Making the choice you did was continuation of “calling your own shots” and making your own choices. You deserve congratulations. In June 2020 after months in remission but still struggling with side effects of maintenance treatment I decided to take the risk and take myself off maintenance. Giving up? Not a chance! But choosing some better quality time for awhile was possible. I hope that you find living with 88 on your terms is everything you want and deserve. Please do come back and share what your quality of life looks like.
Peace, Nancy

Hi Lori,
I do wear hearing aids but they are not as effective as they once were. Now I am having heart problems, scheduled for further testing next month. My heart speeds up at random times causing dizziness and fainting.
Sincerely,
Ron

@rip Hi Ron, it’s good to hear from you. Though I’m not happy to learn you’re having another setback with your heart deciding to hit warp speed without you hitting a turbo button. That has to be very frightening, especially the fainting. Do you live alone?

It’s very good you’re getting this all checked out next month. Do you know what tests you’ll have? Will you be wearing a heart monitor for a few days?

I sure hope your get some positive news...you’re due for some! Let me know what you find out. Sending a hug...and a scratch behind the ear for your cute doggo! ☺️. Lori.

I too have CLL. Yoga helps also if you can walk even 10 minutes. Keep moving. My experience with exercise is keep doing it. Do floor exercise, move to music. Stand on one foot if waiting on a line. It's essential to move if you can. Some days my knees feel weak too. I feel better after a walk. Take a dog or friend even better.

My dog takes me for a walk/run most days. Thank you for your comment

Hi @eam32, I saw your message elsewhere about chronic lymphocytic leukemia (CLL). I'm tagging you in this recent discussion with other members who also have CLL like @tinagibson @pokeyspride2002 @mena2020 @sofaramnotdead @rip @franchronic77 @carl50 @grecarmar @terlato @drpepper.

EAM, can you tell me a bit more about you? When were you diagnosed with CLL? How are you doing today?

I was diagnosed with CLL about11 years ago and up till now did not require any treatment. I feel good, except a little fatigued, along with a slightly swollen groin that doesn't bother me at all so far. there isn't any other swollen nodes or glands so far. I eat a lot of fruits and vegetables during the course of the week along with protein and fish oil capsules; this has been going on for quite a few years. Any further thoughts concerning CLL would be appreciated. I'm a former Korean War combat veteran serving in Korea in 1953-54, if the unhealthy area during those years had any affect whatsoever on CLL. Today South Korea is a beautiful and healthy country and I am proud of their success in making their country attentive to the needs of their citizens. Everett Marabian

I got CLL about 12 years ago and have not had any problems so far. My white bood count is now 82,000; they will not do any treatments until it gets to 160,000. For the last 12 yrs or so it stayed between 82000-93,000 so no medications have been considered. The white blood cells should be between 5,000-10,000 to be good. EAM

Is there a list of CLL side effects that I can access? I have had CLL for 10 yrs. I am 72 and still not knowledgeable about this condition. So far, I am not receiving treatment of any type. I have been with my oncologist for just 2 yrs. My Family Dr started going back into my record investigating blood tests, putting it all together. Any help would be appreciated. Thank you.