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

Posted by rip @rip, Mar 21, 2021

I have CLL and am having problems with my legs. Numbness and tingling, very weak knees and some pain at times. Acetaminophen takes care of the pain but not the other problems. HELP

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Mentor
Lori, Volunteer Mentor | @loribmt | Apr 2, 2022
In reply to @pike70 "Is there a list of CLL side effects that I can access? I have had CLL..." + (show)
@pike70

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.

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Good morning, @pike70 Chronic Lymphocytic Leukemia (CLL) is a cancer of the blood in a group of white blood cells called lymphocytes, which help your body fight infection. CLL most commonly affects older adults and it’s often found incidentally with a routine blood test. Because it is very slow to progress, it’s called chronic instead of acute and doesn’t require any treatment until the disease starts to show signs of proliferation.

Most patients with CLL are asymptomatic at the time of diagnosis. As the disease progresses, some of the more noticeable symptoms are:
Chills
Swollen lymph nodes
Fevers
Night sweats
Shortness of breath
Frequent illnesses
Enlarged spleen causing abdominal pain or fullness
Tiredness
Unexpected weight loss
Enlarged liver

How you feel matters. So it’s important to contact your doctor if you experience chills, fever, or unexpected weight loss.
Only you know how you are feeling. If you’re feeling mentally or physically tired, or experience any of the symptoms mentioned, it’s important to speak up and tell your doctor.

I found a couple of links on our Mayo Clinic website that you might find helpful. They explain the disease, the progression and the possible treatments.
https://www.mayoclinic.org/diseases-conditions/chronic-lymphocytic-leukemia/symptoms-causes/syc-20352428
~~~~~~~~
https://connect.mayoclinic.org/blog/hematology/tab/cll/
It sounds like you have a great family doctor to have caught your blood results, noting the changes and referring you to an oncologist/hematologist. This blood cancer doctor will be keeping an eye on your disease and making sure you stay healthy.
How often do you see your oncologist for follow up blood tests?

REPLY
1 reply
pike70 | @pike70 | Apr 9, 2022
In reply to @loribmt "Good morning, @pike70 Chronic Lymphocytic Leukemia (CLL) is a cancer of the blood in a group..." + (show)
@loribmt

Good morning, @pike70 Chronic Lymphocytic Leukemia (CLL) is a cancer of the blood in a group of white blood cells called lymphocytes, which help your body fight infection. CLL most commonly affects older adults and it’s often found incidentally with a routine blood test. Because it is very slow to progress, it’s called chronic instead of acute and doesn’t require any treatment until the disease starts to show signs of proliferation.

Most patients with CLL are asymptomatic at the time of diagnosis. As the disease progresses, some of the more noticeable symptoms are:
Chills
Swollen lymph nodes
Fevers
Night sweats
Shortness of breath
Frequent illnesses
Enlarged spleen causing abdominal pain or fullness
Tiredness
Unexpected weight loss
Enlarged liver

How you feel matters. So it’s important to contact your doctor if you experience chills, fever, or unexpected weight loss.
Only you know how you are feeling. If you’re feeling mentally or physically tired, or experience any of the symptoms mentioned, it’s important to speak up and tell your doctor.

I found a couple of links on our Mayo Clinic website that you might find helpful. They explain the disease, the progression and the possible treatments.
https://www.mayoclinic.org/diseases-conditions/chronic-lymphocytic-leukemia/symptoms-causes/syc-20352428
~~~~~~~~
https://connect.mayoclinic.org/blog/hematology/tab/cll/
It sounds like you have a great family doctor to have caught your blood results, noting the changes and referring you to an oncologist/hematologist. This blood cancer doctor will be keeping an eye on your disease and making sure you stay healthy.
How often do you see your oncologist for follow up blood tests?

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I follow up in person once a yr. He requires blood tests every 3 months.

REPLY
jns | @jns | Nov 16, 2022

I haveCLL. I'm taking calquence twice a day. My white count is slowly going down. I wonder should I get a second opinion to see if there are better treatments . I'm 74, male.

REPLY
1 reply
Moderator
Colleen Young, Connect Director | @colleenyoung | Nov 16, 2022
In reply to @jns "I haveCLL. I'm taking calquence twice a day. My white count is slowly going down. I..." + (show)
@jns

I haveCLL. I'm taking calquence twice a day. My white count is slowly going down. I wonder should I get a second opinion to see if there are better treatments . I'm 74, male.

Jump to this post

Welcome, @jns. I moved your message about Calquence (acalabrutinib) and decreasing white blood cells to this related discussion:
- Chronic lymphocytic leukemia (CLL): How do you manage side effects?

I did this so you can read previous messages and connect easily with members like @pike70 @deananbeck @suez3 @kegraves @hababeck @sonia85 and others. And to connect with members who are taking Calquence (acalabrutinib) like @profrich @rip @bosunpup.

I think several members would agree that getting a second opinion is a good idea. Might Mayo Clinic be an option for you?

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