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 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.
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.
@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.
@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?
@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?
@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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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.
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2 ReactionsThanks!
@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.
-
Like -
Helpful -
Hug
1 Reaction@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.
-
Like -
Helpful -
Hug
1 Reaction@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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Helpful -
Hug
2 Reactions@siagolfer thank you, will ask doctor about it.
@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?
@sveta25
To prevent viral infection since we are immunocompromised
@siagolfer Thank you, all the best.
What is acyclovir for?