Posted 02 May 2012 - 12:19 AM
As Marnie mentioned, it's really interesting to get a glimpse of what is involved in marketing these things. This one is very much to our advantage, so if you're interested, and qualify, then please contact John Gram.
This isn't a study, it is a survey of what we as CML patients think and feel in relation to what they are marketing, what's coming down the pike, so that OUR issues are known and can be included in it all, instead of just the research side and the oncs focus.
This is very much an opportunity to say what you and many of us indeed are wanting to have heard!
Someone, quick, hop like a bunny and be part of this, for all of us. : )
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!