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.
@mrgreentea How long are you taking Brukinsa?
My husband was on it for 2 1/2 month, all was great in the beginning, his WBC was going down from 201 to 122 but after that his HGB was also very low (7), doctor told him to stop Brukinsa, ordered blood transfusion and he still not taking Brukinsa. His HGB is 9.4 now and WBC 24.
He does blood test every Monday and hopefully will be back on Brukinsa after.
I wonder if anybody else had this problem from taking Brukinsa twice a day.
I’m 74, and was diagnosed with CLL a couple of years ago. I’d had no symptoms except for elevated white blood counts that weren’t caused by an infection. Initially, I saw an oncologist twice a year but currently am scheduled for once a year unless I want to come in sooner. The “watch and wait” plan makes sense to me as I know that treatments, while helpful, have their own side effects.
Hi @akilby Welcome to Connect. Chronic Lymphocytic Leukemia (CLL) is often very slow to develop to the point of requiring any treatment. If you’re currently only having to see your oncologist annually for blood work that’s a pretty good indication that your situation is stable.
You mentioned not really having any symptoms, which is great! So was your diagnosis discovered through blood work with a routine physical?
Greetings
I've had a hematologist for several years. The first one never told me why my lymphocytes were high every time and getting higher. All sorts of gaslighting. ..for years. Then I switched to Mayo for amyloidosis. That team leader is also a hematologist/oncologist. Bless God. He ran al sorts of scans and tests. Then he explained the why. I am grateful for great care.
Hi @akilby Welcome to Connect. Chronic Lymphocytic Leukemia (CLL) is often very slow to develop to the point of requiring any treatment. If you’re currently only having to see your oncologist annually for blood work that’s a pretty good indication that your situation is stable.
You mentioned not really having any symptoms, which is great! So was your diagnosis discovered through blood work with a routine physical?
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@mrgreentea How long are you taking Brukinsa?
My husband was on it for 2 1/2 month, all was great in the beginning, his WBC was going down from 201 to 122 but after that his HGB was also very low (7), doctor told him to stop Brukinsa, ordered blood transfusion and he still not taking Brukinsa. His HGB is 9.4 now and WBC 24.
He does blood test every Monday and hopefully will be back on Brukinsa after.
I wonder if anybody else had this problem from taking Brukinsa twice a day.
Hi @akilby Welcome to Connect. Chronic Lymphocytic Leukemia (CLL) is often very slow to develop to the point of requiring any treatment. If you’re currently only having to see your oncologist annually for blood work that’s a pretty good indication that your situation is stable.
You mentioned not really having any symptoms, which is great! So was your diagnosis discovered through blood work with a routine physical?
Greetings
I've had a hematologist for several years. The first one never told me why my lymphocytes were high every time and getting higher. All sorts of gaslighting. ..for years. Then I switched to Mayo for amyloidosis. That team leader is also a hematologist/oncologist. Bless God. He ran al sorts of scans and tests. Then he explained the why. I am grateful for great care.
@loribmt it was noticed by my primary physician, who sent me to an oncologist for testing. I was pretty shocked, since I’d had no symptoms .