As I learn more and more, I am looking at my blood tests and actually understanding them. My marrow report said I had 1% myeloblasts at diagnosis. I guess that's pretty good!
How many myeloblasts did everyone have at diagnosis?
Posted 21 March 2012 - 02:38 PM
Yes, anything under 5% puts us squarely in Chronic phase. Good for you - learning that stuff so early! It took me a few months before I could actually read something about this disease without hyperventilating!
"You can't change the direction of the wind but you can adjust your sails."
DX 12/08; Gleevec 400mg; liver toxicity; Sprycel 100mg.; CCyR 4/10; MMR 8/10; Pleural Effusion 2/12; Sprycel 50mg. Maintaining MMR; 2/15 PCRU; 8/16 drifting in and out of undetected like a wave meeting the shore. Retired 12/23/2016! 18 months of PCRU, most recent at Mayo on 7/25/17 was negative at their new sensitivity reporting of 0.003.<p>
Posted 21 March 2012 - 02:48 PM
Once my oncologist got my blood results after 1 month on Tasigna and told me he was certain I would do just fine, I relaxed. I never really flipped out too much when I was first dx. I was more intersted in getting the hell out of the hospital. They came in to tell me I had CML and could go home and all I said was "GO HOME?! OK! BYE! Oh, yea..CML leukemia...that's the good kind, right?" lol. I was in the hospital for 4 days scaring myself all over google and had decided if i was gonna get anything it best be CML and it was.
Posted 21 March 2012 - 04:28 PM
No blasts here, but an awful lot of promyelocytes, the next one up in the cell line. I had so many, they at first thought I had APML. Now they think it might have been due to a cortisone shot I had a few wks before. All I know is that it's a teaching hospital, so I had all kinds of budding docs wandering in to ask me questions. Happy to help, and glad I could play "stump the docs" for a little bit, but ONLY for a little bit!
Posted 21 March 2012 - 04:53 PM
I'm at work and my lab reports are at home, but I'm pretty sure I had less than 1% blasts at diagnosis, but 99% leukemic per FISH.
Posted 21 March 2012 - 05:00 PM
Just checked my old reports. One said it was 4% blasts, and another said 5% blasts; 199/200 FISH. It has turned out okay over time : )
Best thing is to be absolutely regular in taking your TKI.
Be alert, but not overly concerned.
• Dx Oct. 22, 2008, WBC 459k, in ICU for 2 days + in hospital 1 week
• Leukapheresis for 1 week, to reduce WBC (wasn't given Hydroxyurea)
• Oct. 28, 2008: CML confirmed, start Gleevec 400mg
• Oct. 31, 2008: sent home when WBC reached 121k
• On/off, reduced dose Gleevec for 7 months
• April 2009: Started Sprycel 100mg
• Sept. 2009: PCRU 0.000
• Sept. 2011: after 2 years steady PCRU & taking Sprycel 100mg before bed, quit Sprycel (with permission)
• Currently: still steady PCRU, testing every 6 months 🤗
— Fatigue, hearing loss continue, alas, but I prefer to think it is all getting better!
Posted 21 March 2012 - 05:24 PM
I was never good at taking pills but in the 4 mths I have been on Tasigna I think I've only missed 5 doses. May seem like a lot, but for me it's amazing I can remember to take them twice a day, especially with the fast and all.
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