Hi everyone, I was diagnosed with CML 2 weeks ago after a post partum visit. Several weeks prior to my diagnosis I started having tingling in my lips in addition to a strange metallic taste with some generalized tooth pain. I was told at the time of diagnosis that these were from my elevated white cell count (around 33k initially) After diagnosis I was started on a short course of hydroxyurea and then started on gleevac. The tingling/taste went away. I stopped the hydroxyurea a few days ago and am now currently only on 400 mg of gleevac (per drs orders) and the symptoms have come back. Does anyone remember how quickly their WBC returned to normal range? He mentioned to me that gleevac works slower than hydroxyurea so it might take some time for the count to drop down. I thank you in advance for you responses. I am very grateful that this community exists to provide knowledge and support to those of us who have recently joined this terrible club.
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Symptoms prior to diagnosis
Welcome to a club you probably did not want to belong to. Based on my experience, I was diagnosed in June 2018 and on July 5 started 400 mg Imatinib daily. Not only did the WBC return to normal quickly, 6bweeks after starting, I had to stop for two weeks because my WBC, platelets, and neutrophils were two low. 14 months in, my counts are marginally normal. Hang in there. The TKI is a miracle drug, really.
I started taking 400 mg. gleevec on August 12. Two weeks later my blood counts were normal. I started out with a WBC of 20k. Of course there are so many other markers they are watching. At my most recent visit, I had the same situation with WBC getting lower and concern with neutrophils dipping, as well. I've had two weeks of labs now that show neutrophils trending up so hope I'm heading in the right direction.
Good Luck!
