1. < Blood Cancers & Disorders
Profile picture for hikerny

Anyone have chronic lymphocytic leukemia (CLL)?

Posted by hikerny @hikerny, Apr 1, 2025

Any individuals with a CLL diagnosis?
Cliff

Interested in more discussions like this? Go to the Blood Cancers & Disorders Support Group.

Profile picture for CaliforniaGal
CaliforniaGal | @califirniagal | Sep 21, 2025
In reply to @nancybev "My doctor just told me yesterday that I have CLL, Stage 0. This came after months..." + (show)
Profile picture for nancybev @nancybev

My doctor just told me yesterday that I have CLL, Stage 0. This came after months of bizarre lab results, and an abdominal ultrasound on which everything was "unremarkable," fortunately. I'm 64, and pretty much never get sick (even the last time I got Covid, I only found out because my son had it so I took my temp. and it was slightly high). I'm waiting to be scheduled for a bone marrow biopsy.

I've been working out regularly for about a year, and this gives me even more incentive because I want to be strong and not have to rely on others to do stuff for me if this progresses. My diet is very healthy. My doctor said I shouldn't drink alcohol at all, but I think I'll stick with one glass of wine a day, because it's something I enjoy, and I've read that moderate (1 drink a day for women) drinking is more or less okay. I'm not ready to live like a monk yet!

My only concern is some skin issues--rashes on my hands, arms, and chest, and what appear to be petechiae on my belly and legs. I'm seeing a dermatologist next week.

Oddly, I'm not really freaked out. I just don't want my son (he's 26 and we're close) to be worried.

So that was my introduction. 🙂 I'll probably be "around" here to ask questions and chat with others going through similar things.

Jump to this post

I am stage 3 CLL & on medication. I get very dry skin & petechiae. I bruise very very easily. However, I am able to play tennis 6 times per week & do pilates 3 times per week. Exercise really helps you feel better.

REPLY
1 reply
Profile picture for CaliforniaGal
CaliforniaGal | @califirniagal | Sep 21, 2025
In reply to @califirniagal "I am stage 3 CLL & on medication. I get very dry skin & petechiae. I..." + (show)
Profile picture for CaliforniaGal @califirniagal

I am stage 3 CLL & on medication. I get very dry skin & petechiae. I bruise very very easily. However, I am able to play tennis 6 times per week & do pilates 3 times per week. Exercise really helps you feel better.

Jump to this post

PS. am probably stage 2 now. My white blood cell count was 441 a year ago and is 30 now.

REPLY
Profile picture for CaliforniaGal
CaliforniaGal | @califirniagal | Sep 21, 2025
In reply to @mrgreentea "Hi @nancybev My kids were also concerned until I got us all up to speed. There..." + (show)
Profile picture for mrgreentea @mrgreentea

Hi @nancybev

My kids were also concerned until I got us all up to speed. There is a ton of information to learn, but fortunately so many great & reliable resources available.

I was dx'd May'24 @ 64. I went on drugs (Zanubrutinib) immediately. Both Mayo and UMN Med Center did biopsies, FISH, along with too many other tests to keep track of. As you have learned, or will hopefully soon learn, for most people it's something to live with... though unfortunately some people are impacted to a much greater degree.

There is a lot of support right here & out there for CLL and its variants. Staying healthy is a great idea, so kudoos for that! Happy to answer any questions if you have them.

Jump to this post

I take Brukinsa too. What side effects do you have, and how do you manage them? I bruise extremely easily, have dry skin, nails and eyes.
Also petechiae on my leg. I am lucky to not have any fatigue.

REPLY
1 reply
Profile picture for CaliforniaGal
CaliforniaGal | @califirniagal | Sep 21, 2025

I have CLL and take Brukinsa. If you are on medication for CLL, is it the same or something else? Do you have side effects?

REPLY
Profile picture for CaliforniaGal
CaliforniaGal | @califirniagal | Sep 21, 2025
In reply to @fg050370 "About 4 years ago, I started to encounter an abnormal amount of fatigue and water retention...." + (show)
Profile picture for fg050370 @fg050370

About 4 years ago, I started to encounter an abnormal amount of fatigue and water retention. I was already on water pills but still retaining water. The doctors tried a few different medications but was getting worse. I switched doctors a few times and looked at my organs a few times. Last year my new doctor suggested that I see a hemotaligist and they discovered that I had CLL. I'm at stage zero but the fatigue comes in waves now and my empedima is flaring up like crazy. I've just started taking lymphatic drainage herbal tonic and it's working draining the water from my feet, ankles, and legs. It's also improving my energy. Unfortunately I can no longer work as electrician because of my condition. At 55 I can't collect social security, so I'm now struggling with my health and finances. I'm hopeful that I'll be able to manage my illness so that I can at least perform normal tasks again.

Jump to this post

Please tell me what Lymphatic drainage herbal supplement you take. I could use that.
Taking Brukinsa has made a huge difference in all my swollen Lymph glands went away. Get lots of exercise, because that will help you.

REPLY
1 reply
Profile picture for Colleen Young, Connect Director
Moderator
Colleen Young, Connect Director | @colleenyoung | Sep 21, 2025
In reply to @fg050370 "About 4 years ago, I started to encounter an abnormal amount of fatigue and water retention...." + (show)
Profile picture for fg050370 @fg050370

About 4 years ago, I started to encounter an abnormal amount of fatigue and water retention. I was already on water pills but still retaining water. The doctors tried a few different medications but was getting worse. I switched doctors a few times and looked at my organs a few times. Last year my new doctor suggested that I see a hemotaligist and they discovered that I had CLL. I'm at stage zero but the fatigue comes in waves now and my empedima is flaring up like crazy. I've just started taking lymphatic drainage herbal tonic and it's working draining the water from my feet, ankles, and legs. It's also improving my energy. Unfortunately I can no longer work as electrician because of my condition. At 55 I can't collect social security, so I'm now struggling with my health and finances. I'm hopeful that I'll be able to manage my illness so that I can at least perform normal tasks again.

Jump to this post

@fg050370, dealing with health and financial issues isn't easy, especially with debilitating fatigue. I wanted to let you know about FindHelp https://www.findhelp.org/
FindHelp is a resource directory that helps people find and connect to social services in their area. Services include food pantries, help paying bills, housing, job training, after-school programming and more.

REPLY
Profile picture for mrgreentea
mrgreentea | @mrgreentea | Sep 21, 2025
In reply to @califirniagal "I take Brukinsa too. What side effects do you have, and how do you manage them?..." + (show)
Profile picture for CaliforniaGal @califirniagal

I take Brukinsa too. What side effects do you have, and how do you manage them? I bruise extremely easily, have dry skin, nails and eyes.
Also petechiae on my leg. I am lucky to not have any fatigue.

Jump to this post

I've been on Brukinsa since June'24. No side effects so far. I take 2 pills twice a day & generally have at least something little to eat (7:30am/5:30pm). I drink tea throughout the day. I have noticed I am slightly more prone to bruising. A lot more likely to be sick longer – but that's a CLL side effect. Most of my non-CLL stats are pretty much ok. The only other drug I am on is a low dose statin - just thinking about other drug interactions you might have. I'm not sure anyone knows why we all end up with different symptoms from any drug...

I hope this helps!

REPLY
Profile picture for lori413
lori413 | @lori413 | Sep 21, 2025

I was diagnosed with cll in Feb of this year. I thought I was going through menopause lol little did I know what was ahead. When I looked at the blood work, I went back as far as Jan 2023 and my lymphocytes had been high at that time. Gradually going higher and higher, I also had a chronic UTI. Finally in Feb of this year something clicked with my primary care provider. Remember, I and she thought it was menopause. So I was being treated for that which had my hormones all out of wack. When she said you have a UTI, I said. What’s new, I always have one. That’s when she started digging deeper into what was going on with me. Yes I had a uti and the antibiotics that was given to me before wasn’t working because I had ecoli in my bladder. She gave me stronger meds and referred me to the oncologist. I’m a stage 1 with cll/sll, lymph nodes are enlarged as are the lymph nodes around my liver and spleen. I have every symptom except weight loss. Lol. I need that! Haha. I have to find the funny in this disease. Lately I have had joint pan with swelling in my ankles mostly the right one and my hands hurt so bad. Tonight I noticed a bump and swelling on my thumb. Sometimes I just want to cry. I’m 53 and this sucks.

REPLY
1 reply
Profile picture for fg050370
fg050370 | @fg050370 | Sep 22, 2025
In reply to @califirniagal "Please tell me what Lymphatic drainage herbal supplement you take. I could use that. Taking Brukinsa..." + (show)
Profile picture for CaliforniaGal @califirniagal

Please tell me what Lymphatic drainage herbal supplement you take. I could use that.
Taking Brukinsa has made a huge difference in all my swollen Lymph glands went away. Get lots of exercise, because that will help you.

Jump to this post

Nature's sunshine lymphatic drainage and pure health lymph system support. I'm also going to try the raw Herb form from these in a tea. I recently found out that high ambient temperatures can make it worse.

REPLY
1 reply
Profile picture for bochos
bochos | @bochos | Sep 22, 2025

Hello,
I have had CLL for 3/4 years. The first 3 years it was dormant if that’s the right word. Then I had a flare up: un steady on my feet, light headed. That was caused by a hemoglobin reading of 6 which is not good. So after two units of new blood and 4 infusions of ribitaux (sp?) my blood results are back to normal as my Doctor tells me. But she also said once one has CLL one will have it for the rest of their life. So other than living a healthy lifestyle there isn’t really anything one can do.
I have posted on this site before with my advice (?) and maybe I’m becoming redundant but hope for the best with my positive attitude. Life goes on and enjoy it. I am 77 and will continue with my positive attitude.
Butch Ukura

REPLY
Please sign in or register to post a reply.