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Anyone have chronic lymphocytic leukemia (CLL)?
Blood Cancers & Disorders | Last Active: Jun 22 7:21am | Replies (368)Comment receiving replies
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.
Replies to "Hi @ppolockaz, in Dec'23 it was discovered that I had a high WBC (50), which started..."
@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.
@mrgreentea
I am on the same medication and was told I could take both pills at the same time and that it was not necessary to spread them twice a day. I double-checked this with my doctor and with the company that makes the medicine. It still makes me wonder why others are told to take them twice a day. confusing
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@mrgreentea thank you for all that insight. This all has had me shaken a bit since I was healthy and active and all of a sudden it’s a shock. Just getting information and listening to others is helping alot