I was diagnosed with CLL 3/4 years ago had an extremely low hemoglobin count after two years 6. Not good so after two units of blood and four infusions of Ribitoux (sp?) things changed for the good. Monthly blood tests turned into waiting for three months blood tests. I have always had very light nights sweats which my Doctor is concerned about but my sheets are not soaking wet. So I feel good no weight loss or loss of appetite or energy. So I asked my Doctor what causes CLL . She says No one in the Medical Field has figured that out at this point in time but they have ways to treat CLL. So I’m in a wait and see. No treatment etc. yet. I’m just going to live my life as best as I can and keep a positive attitude. I have posted a few times before on this site and people being treated with different drugs with side effects I feel for. I’m not there yet.
Anecdotally, a positive attitude is a good thing to have. My attitude which is positive I will just deal with my CLL.
Take Care in the best way one can,
Butch Ukura
@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
@siagolfer Thank you for your response.
Is it half dose for Brukinsa or Allopurinol?
Did you stop allopurinol completely?
My husband is 80 years old, had CLL from 2023, started treatment last month after WBC was 237.
@siagolfer Thank you for your response.
Is it half dose for Brukinsa or Allopurinol?
Did you stop allopurinol completely?
My husband is 80 years old, had CLL from 2023, started treatment last month after WBC was 237.
@sveta25
it is half a dose of Brukinsa
80X2
Completely stopped allopurinol since WBC came down from 151 to low 30s in about 4 months
I take two tabs of acyclovir daily with Brukinsa
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 promised you an update after my appointment with my oncologist. I am still stable. In fact, my WBC is down to 13! It is still elevated over 'normal', but lower than my previous lab. I have blood work every three months, and I have learned that, while values tend to go up and down - in general I am stable. My oncologist is continuing (for now) my monthly gamma globulin infusions. I feel very fortunate and hope I continue being stable. So, now I can concentrate on upcoming visits with the cardiologist and nephrologist!
@sveta25
it is half a dose of Brukinsa
80X2
Completely stopped allopurinol since WBC came down from 151 to low 30s in about 4 months
I take two tabs of acyclovir daily with Brukinsa
@sweetsuzy
I promised you an update after my appointment with my oncologist. I am still stable. In fact, my WBC is down to 13! It is still elevated over 'normal', but lower than my previous lab. I have blood work every three months, and I have learned that, while values tend to go up and down - in general I am stable. My oncologist is continuing (for now) my monthly gamma globulin infusions. I feel very fortunate and hope I continue being stable. So, now I can concentrate on upcoming visits with the cardiologist and nephrologist!
@bettycll
Thank you for your update. I am newly diagnosed with CLL and in the wait and watch stage (bloodwork every 3 months). May I ask whether the gamma globulin injections are standard treatment for CLL?
@pinkiedo1, I add my belated welcome. It sounds like you are experiencing fatigue or low energy with your diagnosis of chronic lymphocytic leukemia (CLL). Do you have other symptoms? Is treatment being recommended for you?
@bettycll
Thank you for your update. I am newly diagnosed with CLL and in the wait and watch stage (bloodwork every 3 months). May I ask whether the gamma globulin injections are standard treatment for CLL?
@txgirl88
Hi! When I was newly diagnosed, it was pretty much all I could think about! Now after some months of watch and wait and being stable, I don't think of it all the time. I hope the same will be true for you! When I was first diagnosed with CLL, I had been experiencing 8 months of sinus infections - with months of antibiotics; I had sinus surgery scheduled. When my Primary wanted me to see a hematologist because of my elevated white blood cells - I, of course, thought the elevated white blood cells were from all of the sinus infections. The hematologist/oncologist disagreed and thought the infections were due to the CLL. Blood testing determined that my immune system numbers were below normal. So, she started me on the gamma globulin infusions. So, I do not know if the infusions are considered standard treatment, or not. However, I have learned that they are very common for patients with CLL because many CLL patients do have compromised immune systems. On your next visit, you might want to ask your oncologist about testing for your immune system.
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I was diagnosed with CLL 3/4 years ago had an extremely low hemoglobin count after two years 6. Not good so after two units of blood and four infusions of Ribitoux (sp?) things changed for the good. Monthly blood tests turned into waiting for three months blood tests. I have always had very light nights sweats which my Doctor is concerned about but my sheets are not soaking wet. So I feel good no weight loss or loss of appetite or energy. So I asked my Doctor what causes CLL . She says No one in the Medical Field has figured that out at this point in time but they have ways to treat CLL. So I’m in a wait and see. No treatment etc. yet. I’m just going to live my life as best as I can and keep a positive attitude. I have posted a few times before on this site and people being treated with different drugs with side effects I feel for. I’m not there yet.
Anecdotally, a positive attitude is a good thing to have. My attitude which is positive I will just deal with my CLL.
Take Care in the best way one can,
Butch Ukura
@siagolfer Thank you for your response.
Is it half dose for Brukinsa or Allopurinol?
Did you stop allopurinol completely?
My husband is 80 years old, had CLL from 2023, started treatment last month after WBC was 237.
@sveta25
it is half a dose of Brukinsa
80X2
Completely stopped allopurinol since WBC came down from 151 to low 30s in about 4 months
I take two tabs of acyclovir daily with Brukinsa
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Helpful -
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1 Reaction@sweetsuzy
I promised you an update after my appointment with my oncologist. I am still stable. In fact, my WBC is down to 13! It is still elevated over 'normal', but lower than my previous lab. I have blood work every three months, and I have learned that, while values tend to go up and down - in general I am stable. My oncologist is continuing (for now) my monthly gamma globulin infusions. I feel very fortunate and hope I continue being stable. So, now I can concentrate on upcoming visits with the cardiologist and nephrologist!
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Hug
2 Reactions@siagolfer Thank you, all the best.
What is acyclovir for?
@sveta25
To prevent viral infection since we are immunocompromised
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1 Reaction@bettycll
Thank you for your update. I am newly diagnosed with CLL and in the wait and watch stage (bloodwork every 3 months). May I ask whether the gamma globulin injections are standard treatment for CLL?
@pinkiedo1, I add my belated welcome. It sounds like you are experiencing fatigue or low energy with your diagnosis of chronic lymphocytic leukemia (CLL). Do you have other symptoms? Is treatment being recommended for you?
@siagolfer thank you, will ask doctor about it.
@txgirl88
Hi! When I was newly diagnosed, it was pretty much all I could think about! Now after some months of watch and wait and being stable, I don't think of it all the time. I hope the same will be true for you! When I was first diagnosed with CLL, I had been experiencing 8 months of sinus infections - with months of antibiotics; I had sinus surgery scheduled. When my Primary wanted me to see a hematologist because of my elevated white blood cells - I, of course, thought the elevated white blood cells were from all of the sinus infections. The hematologist/oncologist disagreed and thought the infections were due to the CLL. Blood testing determined that my immune system numbers were below normal. So, she started me on the gamma globulin infusions. So, I do not know if the infusions are considered standard treatment, or not. However, I have learned that they are very common for patients with CLL because many CLL patients do have compromised immune systems. On your next visit, you might want to ask your oncologist about testing for your immune system.
-
Like -
Helpful -
Hug
2 Reactions