@cindyjenco
I have a CLL
specialist at Mayo
I am 77 years
I was on wait and watch for 3 years
Started treatment May 2025 with Brukinsa
Numbers returning to
Near normal
Extremely please with my specialist
I was diagnosed in March. So far, I know that I am Stage 1, but many of my blood numbers are in “normal range.” The Kaiser protocol appears to be “see you in a year” to check again. My wife got the oncologist to agree to checking in six months. Slowly, that punched in the gut feeling is being replaced but it all still feels overwhelming. I remind myself since it’s chronic, I need to find a new balance and that will take time. I want to be angry with someone, but I’m getting used to “sh#@ happens!” So, I’m checking out my holistic approach options in S.F, CA Bay Area to help my body be the best it can be and finding my way back to those activities I can still do, if I rest when there’s a need.
One curious thing. Did anyone else discover that their blood had been routinely being checked for leukemia for several years? Most of my tests said that there were no trends because this was the first test. But one said “Normal” for several years and only this time said “Leukemia.” (I just realized that they could have been checking for anything. Okay, still a mystery, but somehow an easier one to take. They could have been checking to see if hyperparathyroid condition had returned.). Back to waiting for my oncologist to decipher all the blood tests results that came in this week.
I was followed every 3 months for my CBC and check white blood cells. I am going to doctor March 2nd to get results of my blood tests and to check my lymph nodes in my neck, groin and stomach. Do you have enlarged lymph nodes?
Good Luck with your blood tests also.
I really appreciate all of the information above, especially all of the links from Lori. I was diagnosed with CLL a year ago. It was like a punch in the gut! Even though the oncologist said it was slow growing - all I could think of was people I knew who died of leukemia (she focused on "chronic" while I focused on "leukemia"). I have immersed in research and joined Mayo Clinic Connect, of course. I feel like I am a sponge for information on CLL (and other issues I have, like AFib). My CLL is Stage 0 and hope that will remain for many years. Although my counts fluctuate, I am stable. It is encouraging to read about others who have remained stable for many years.
I was diagnosed a year ago too betty and I am at Stage 0 also. I am 75 and live in Nova Scotia and would like to keep in touch with you because we are similar in our Stage and diagnosis. Do you have enlarged lymph nodes also? I am Stable right now so doing good. No issues except my hair sweats at night. Does yours?
@sweetsuzy I have been on half dose and continuing
No real side effects so far after 9 months
As I side numbers have significantly improved
Platelets still on the lower end of normal range
Will see doc at Mayo in April and determine next steps
I guess I will continue half dose
I was diagnosed a year ago too betty and I am at Stage 0 also. I am 75 and live in Nova Scotia and would like to keep in touch with you because we are similar in our Stage and diagnosis. Do you have enlarged lymph nodes also? I am Stable right now so doing good. No issues except my hair sweats at night. Does yours?
@sweetsuzy
I am delighted to hear from you, Suzy! As you say, we are similar in our Stage and diagnosis. However, I live in the state of Georgia in the US, so we may not be able to get together for a chat over a cup of coffee!
I do not think I have enlarged lymph nodes. However, I see the oncologist Thursday and will have a better idea of how I am doing! Mostly, my diagnosis is from blood work, not symptoms. Yes, my hair occasionally sweats at night - but nothing that I can't live with. I also sometimes get day sweats where sweat just runs down my face and my back is soaked. This is not often - maybe a couple times a month, but it is disturbing. I mentioned it to my oncologist, but she didn't seem to think it is associated with my CLL and told me to let her know if it happens more frequently. I am Stable (and hope to stay that way). My WBC fluctuates from 14 to 17. I read everything I can find and hope I will be able to manage for the long term without any treatment.
How is your immune system? Due to gum surgery, I had REPEAT sinus infections for 8 months. My PCP noted my elevated WBC and wanted me to see a hematologist. I was CERTAIN the elevated numbers were due to the many infections and thought he was being overly cautious. However, after CLL diagnosis, my oncologist thought the infections were due to the CLL (sort of - is it the chicken or the egg?)! Anyway, she has me on infusions of gamma globulin every 4 weeks to boost my immune system. I don't know how long I will have them; but I have been free of colds, flu, Covid, etc. I have since learned that many CLL patients experience a lowered immune system. I will be in touch after my Thursday appointment if I have any updates. Nice to meet you!
Hello! I am glad to have found this group. I have had elevated wbc, C-reactive protein and lymphocytes since at least 2016. I was sent to an oncologist in 2023 who told me I was fat (in so many words) and my body was inflammed. I was overweight but not obese. But I did work at losing 40 pounds and my levels are higher than when I was 40 pounds heavier.
I have a new primary Dr who I love and I want to approach the topic of looking into the possibility of me having CLL. I have been sick (re-occurring sinus infections/colds) since December. I take an antibiotic and get better for a week or so and then get sick again.
What type of tests should I be talking to my Dr about? Thank you for any guidance.
Oh my grandpa had CLL but wasn’t diagnosed until his late 70’s. I’m only 53.
Hello! I am glad to have found this group. I have had elevated wbc, C-reactive protein and lymphocytes since at least 2016. I was sent to an oncologist in 2023 who told me I was fat (in so many words) and my body was inflammed. I was overweight but not obese. But I did work at losing 40 pounds and my levels are higher than when I was 40 pounds heavier.
I have a new primary Dr who I love and I want to approach the topic of looking into the possibility of me having CLL. I have been sick (re-occurring sinus infections/colds) since December. I take an antibiotic and get better for a week or so and then get sick again.
What type of tests should I be talking to my Dr about? Thank you for any guidance.
Oh my grandpa had CLL but wasn’t diagnosed until his late 70’s. I’m only 53.
@lisascherer1 Hi Lisa. I’m so glad you found us too. I think you’ll like it here. ☺️ Welcome to Connect.
From my understanding, while CLL is not directly inherited like some genetic disorders, having a family history of the disease may increase the possibility down the road. With your grandfather having been diagnosed I can understand your concern with changes you’ve seen in your blood test results.
Definitely talk this over with your primary doctor. They may refer to back to a hematologist. Hopefully there are more to chose from that your doctor from 2023. That person seemed a bit prickly with their approach. I do congratulate you on your weight loss because that’s not an easy challenge to take on. But the fact that your numbers didn’t improve after the loss would be an indicator that their assessment of your health may have been based on bias. And that’s not the type of person you’ll feel comfortable with. But initially your Primary could request the proper blood work to get you started.
@cindyjenco
I have a CLL
specialist at Mayo
I am 77 years
I was on wait and watch for 3 years
Started treatment May 2025 with Brukinsa
Numbers returning to
Near normal
Extremely please with my specialist
@siagolfer my husband started Brukinsa 160 mg twice a day a month ago( after 3 years of W& W )and was told to take Allopurinol with it once a day. He had no symptoms for a month but for a past couple of days he feels weak, tired, achy and sleepy. He has appointment with his oncologist next week. I was wondering if you have or had sometime the same symptoms while on Brukinsa?
@siagolfer my husband started Brukinsa 160 mg twice a day a month ago( after 3 years of W& W )and was told to take Allopurinol with it once a day. He had no symptoms for a month but for a past couple of days he feels weak, tired, achy and sleepy. He has appointment with his oncologist next week. I was wondering if you have or had sometime the same symptoms while on Brukinsa?
@sveta25
I also took allopurinol for three months to clean up the dead cells or proteins liberated when one starts Brukinsa
Platelets RBC WBC get worse before getting better
I have always been on half dose due to my age and this has worked well so far
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Anybody has muscle pain after taking Brukinsa?
Awesome news! Was the treatment hard to handle and how long were you on it? So happy for you!
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1 ReactionI was followed every 3 months for my CBC and check white blood cells. I am going to doctor March 2nd to get results of my blood tests and to check my lymph nodes in my neck, groin and stomach. Do you have enlarged lymph nodes?
Good Luck with your blood tests also.
@bettycll
I was diagnosed a year ago too betty and I am at Stage 0 also. I am 75 and live in Nova Scotia and would like to keep in touch with you because we are similar in our Stage and diagnosis. Do you have enlarged lymph nodes also? I am Stable right now so doing good. No issues except my hair sweats at night. Does yours?
@sweetsuzy I have been on half dose and continuing
No real side effects so far after 9 months
As I side numbers have significantly improved
Platelets still on the lower end of normal range
Will see doc at Mayo in April and determine next steps
I guess I will continue half dose
@sweetsuzy
I am delighted to hear from you, Suzy! As you say, we are similar in our Stage and diagnosis. However, I live in the state of Georgia in the US, so we may not be able to get together for a chat over a cup of coffee!
I do not think I have enlarged lymph nodes. However, I see the oncologist Thursday and will have a better idea of how I am doing! Mostly, my diagnosis is from blood work, not symptoms. Yes, my hair occasionally sweats at night - but nothing that I can't live with. I also sometimes get day sweats where sweat just runs down my face and my back is soaked. This is not often - maybe a couple times a month, but it is disturbing. I mentioned it to my oncologist, but she didn't seem to think it is associated with my CLL and told me to let her know if it happens more frequently. I am Stable (and hope to stay that way). My WBC fluctuates from 14 to 17. I read everything I can find and hope I will be able to manage for the long term without any treatment.
How is your immune system? Due to gum surgery, I had REPEAT sinus infections for 8 months. My PCP noted my elevated WBC and wanted me to see a hematologist. I was CERTAIN the elevated numbers were due to the many infections and thought he was being overly cautious. However, after CLL diagnosis, my oncologist thought the infections were due to the CLL (sort of - is it the chicken or the egg?)! Anyway, she has me on infusions of gamma globulin every 4 weeks to boost my immune system. I don't know how long I will have them; but I have been free of colds, flu, Covid, etc. I have since learned that many CLL patients experience a lowered immune system. I will be in touch after my Thursday appointment if I have any updates. Nice to meet you!
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Like -
Helpful -
Hug
2 ReactionsHello! I am glad to have found this group. I have had elevated wbc, C-reactive protein and lymphocytes since at least 2016. I was sent to an oncologist in 2023 who told me I was fat (in so many words) and my body was inflammed. I was overweight but not obese. But I did work at losing 40 pounds and my levels are higher than when I was 40 pounds heavier.
I have a new primary Dr who I love and I want to approach the topic of looking into the possibility of me having CLL. I have been sick (re-occurring sinus infections/colds) since December. I take an antibiotic and get better for a week or so and then get sick again.
What type of tests should I be talking to my Dr about? Thank you for any guidance.
Oh my grandpa had CLL but wasn’t diagnosed until his late 70’s. I’m only 53.
-
Like -
Helpful -
Hug
3 Reactions@lisascherer1 Hi Lisa. I’m so glad you found us too. I think you’ll like it here. ☺️ Welcome to Connect.
From my understanding, while CLL is not directly inherited like some genetic disorders, having a family history of the disease may increase the possibility down the road. With your grandfather having been diagnosed I can understand your concern with changes you’ve seen in your blood test results.
Definitely talk this over with your primary doctor. They may refer to back to a hematologist. Hopefully there are more to chose from that your doctor from 2023. That person seemed a bit prickly with their approach. I do congratulate you on your weight loss because that’s not an easy challenge to take on. But the fact that your numbers didn’t improve after the loss would be an indicator that their assessment of your health may have been based on bias. And that’s not the type of person you’ll feel comfortable with. But initially your Primary could request the proper blood work to get you started.
As for tests to have to help determine or not if you have CLL, this article from the Mayo Cancer Blog is pretty helpful. Though after reading, you’ll see that CLL is more common in older males. But it’s certainly not a condition with limitations to age or sex.
https://cancerblog.mayoclinic.org/2023/02/09/chronic-lymphocytic-leukemia-blood-tests-for-diagnosis-and-treatment/
Have you mentioned your health history and concerns with your new doctor?
@siagolfer my husband started Brukinsa 160 mg twice a day a month ago( after 3 years of W& W )and was told to take Allopurinol with it once a day. He had no symptoms for a month but for a past couple of days he feels weak, tired, achy and sleepy. He has appointment with his oncologist next week. I was wondering if you have or had sometime the same symptoms while on Brukinsa?
@sveta25
I also took allopurinol for three months to clean up the dead cells or proteins liberated when one starts Brukinsa
Platelets RBC WBC get worse before getting better
I have always been on half dose due to my age and this has worked well so far