Yes, since 1996 with only having oral chemo 3 time when my white count became 80-100. I have been stable since 2015 with just blood work twice a year to check. It was scary at first, but I remember my first oncologist telling me to go about my life as though nothing had changed. It took a while, but eventually I did.
@nana120THat is so wild to me. I was recently diagnosed. I used to be seen for hematology at another practice. I noticed that my white blood cell counts were going up, but no one told me why or answered my questions. Now, years later, I find out why. This 'Wait and Watch' approach sent my anxiety through the roof. It is crazy. Intellectually, I get it. But emotionally it does not make sense.
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
@bochos Hi. It is interesting that you have light night sweats. So do I. I have had a few really drenching episodes. Crazy. I am fairly new to the Mayo practice. They are watching a few symptoms that now make sense. I had been seen at another practice prior.
I am generally a very positive and happy person. This has blown my mind. It will take me just a little while to find my footing with CLL.
Things are getting better, mentally speaking. I'm not in shock anymore. As I share with those that care, I feel lightened. A breast cancer survivor urged me to tell. She was right. I am grateful that I have a c strong village.
I was just diagnosed with CLL, I was healthy until this, am age 70. I'm at the Wait and See (or as ive heard Wait and Worry), and I haven't seen what NUMBERS (WBC and Absolute Lymphocytes) need to be for it to get to the "it's time for treatment". I've had a PETSCAN which showed some minor lymph enlargements but no liver or kidney or spleen issues (CLL related, anyway). Ate reasonably healthy but have cut out any bad foods and only what's reccomended. Any input or advice? The STRESS of it seems to be the bad part for me because I have felt totally healthy until the bloodwork said "not so fast bubba...".......
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.
@bettycll when you say your counts flucuate, can you tell me what the numbers are? I cant get answers on that. I just got diagnosed in Febuary after a Jan physical showed abnormal WBC and
ALC counts.....thx
@bettycll when you say your counts flucuate, can you tell me what the numbers are? I cant get answers on that. I just got diagnosed in Febuary after a Jan physical showed abnormal WBC and
ALC counts.....thx
@ppolockaz
I know it is SO confusing and concerning. When I said my counts fluctuate, I meant the WBC. The normal range for WBC (for my lab) is 3.3 to 10.5. My numbers change. The first lab my WBC was 16.08 (I was sure I was in trouble). A few months later, it was 11.68 (I thought things were getting better). Later that same month, it was 14.05 (now I thought I was rapidly getting worse!). The numbers do not have a direct line up or down; they zig zag, but always above 'normal'. Of course, the doctors are concerned with ALL the numbers, but the other number that seems significant is Absolute Lymphs; normal range being 1.2 to 3.2. Again I go up and down, generally hovering between 7 and 8. I was told that if a number doubles in 6 months, then they generally start a treatment. Even though many of us are on "watch and wait" or whatever one wants to call it - CLL is ALWAYS in the back of my mind!
My husband’s absolute Lymph’s have been elevated over the last few years (I just noticed this when I looked at his lab work). The NP, at our primary office, whom we see never mentioned it as a concern.
I was just diagnosed with CLL, I was healthy until this, am age 70. I'm at the Wait and See (or as ive heard Wait and Worry), and I haven't seen what NUMBERS (WBC and Absolute Lymphocytes) need to be for it to get to the "it's time for treatment". I've had a PETSCAN which showed some minor lymph enlargements but no liver or kidney or spleen issues (CLL related, anyway). Ate reasonably healthy but have cut out any bad foods and only what's reccomended. Any input or advice? The STRESS of it seems to be the bad part for me because I have felt totally healthy until the bloodwork said "not so fast bubba...".......
Hi @ppolockaz, in Dec'23 it was discovered that I had a high WBC (50), which started me on a 5 month journey of tests. I had no pronounced symptoms that I had noticed so it came as a total surprise. The short story is that I ended up being dx'd with CLL (see my other posts for more if you are interested).
For me, treatment amounted to taking a pill twice a day (Zanubrutinib/Brukinsa) and going for periodic visits to Mayo. I didn't get or need any infusions. The transition to this way of life (taking those pills, being more wary of situations that could lead me to getting sick) was mostly not a big event. I feel mostly the same, and do all of the things I did before.
If / when you get to the point of needing any meds, at least in my experience, it didn't turn out to be nearly as bad as a had first imagined it might be.
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@nana120THat is so wild to me. I was recently diagnosed. I used to be seen for hematology at another practice. I noticed that my white blood cell counts were going up, but no one told me why or answered my questions. Now, years later, I find out why. This 'Wait and Watch' approach sent my anxiety through the roof. It is crazy. Intellectually, I get it. But emotionally it does not make sense.
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2 Reactions@bochos Hi. It is interesting that you have light night sweats. So do I. I have had a few really drenching episodes. Crazy. I am fairly new to the Mayo practice. They are watching a few symptoms that now make sense. I had been seen at another practice prior.
I am generally a very positive and happy person. This has blown my mind. It will take me just a little while to find my footing with CLL.
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Helpful -
Hug
1 ReactionThanks!
Things are getting better, mentally speaking. I'm not in shock anymore. As I share with those that care, I feel lightened. A breast cancer survivor urged me to tell. She was right. I am grateful that I have a c strong village.
-
Like -
Helpful -
Hug
4 ReactionsI was just diagnosed with CLL, I was healthy until this, am age 70. I'm at the Wait and See (or as ive heard Wait and Worry), and I haven't seen what NUMBERS (WBC and Absolute Lymphocytes) need to be for it to get to the "it's time for treatment". I've had a PETSCAN which showed some minor lymph enlargements but no liver or kidney or spleen issues (CLL related, anyway). Ate reasonably healthy but have cut out any bad foods and only what's reccomended. Any input or advice? The STRESS of it seems to be the bad part for me because I have felt totally healthy until the bloodwork said "not so fast bubba...".......
-
Like -
Helpful -
Hug
1 Reaction@bettycll when you say your counts flucuate, can you tell me what the numbers are? I cant get answers on that. I just got diagnosed in Febuary after a Jan physical showed abnormal WBC and
ALC counts.....thx
@sveta25 acyclovir is an anti-viral.
@ppolockaz
I know it is SO confusing and concerning. When I said my counts fluctuate, I meant the WBC. The normal range for WBC (for my lab) is 3.3 to 10.5. My numbers change. The first lab my WBC was 16.08 (I was sure I was in trouble). A few months later, it was 11.68 (I thought things were getting better). Later that same month, it was 14.05 (now I thought I was rapidly getting worse!). The numbers do not have a direct line up or down; they zig zag, but always above 'normal'. Of course, the doctors are concerned with ALL the numbers, but the other number that seems significant is Absolute Lymphs; normal range being 1.2 to 3.2. Again I go up and down, generally hovering between 7 and 8. I was told that if a number doubles in 6 months, then they generally start a treatment. Even though many of us are on "watch and wait" or whatever one wants to call it - CLL is ALWAYS in the back of my mind!
-
Like -
Helpful -
Hug
2 ReactionsI’m new to this group! Hello.
My husband’s absolute Lymph’s have been elevated over the last few years (I just noticed this when I looked at his lab work). The NP, at our primary office, whom we see never mentioned it as a concern.
Absolute lymphocytes
2020- 4
2021- 3.9
2022-4.5
2023-4.5
2024-5.7
2025-5.772
We have our well visits/lab work coming up in a few weeks.
I’m wondering why she never address these numbers. Are they significant in what everyone here has seen?
It has me worried.
Hi @ppolockaz, in Dec'23 it was discovered that I had a high WBC (50), which started me on a 5 month journey of tests. I had no pronounced symptoms that I had noticed so it came as a total surprise. The short story is that I ended up being dx'd with CLL (see my other posts for more if you are interested).
For me, treatment amounted to taking a pill twice a day (Zanubrutinib/Brukinsa) and going for periodic visits to Mayo. I didn't get or need any infusions. The transition to this way of life (taking those pills, being more wary of situations that could lead me to getting sick) was mostly not a big event. I feel mostly the same, and do all of the things I did before.
If / when you get to the point of needing any meds, at least in my experience, it didn't turn out to be nearly as bad as a had first imagined it might be.