I'll just mention, FWIW, that I still get overwhelmed by heat and have to retreat from it, even after being off Sprycel for almost four years (after being PCRU for two years). Still wonder why I got CML, and still wonder why it went away for me and not for everyone else. I have no answers to offer. Just encouragement to everyone.
I still have fatigue, still have some ongoing brain fog, still have bone/muscle/joint pains (and arthritis everywhere: why? and, I love my new knee!), still live with funny bumps on my skin, still can't hear, still wonder about why my eyes are changing, etc. The whole shebang.
It may be "that's life," it may be residual effects of TKIs. I don't know.
I'm just saying that having had CML and been blessed with a miraculous "recovery" starting with reaching PCRU at 11 months, then staying on Sprycel 100mg for two years w/o having any blips in my PCRU readings, then quitting medication for good in Sept. 2011 — with permission and support from the specialist at Stanford and from my hema/onc — almost four years later I am still dealing with hearing loss and arthritis and so on.
I take no medications, I eat organic, I meditate, I love life. I still read this forum every so often. I appreciate every question and every response written here, and feel for everyone's situation. Everyone matters so much in our world of CML survivors, and I remember and cherish all those who have passed, having shared their journey and ideas and love with us.
And all the while I wonder if there was/is anything else I can do to increase my energy — my PCP says that after 10 years of fatigue, including the CML dx and treatment, and every test we can run and then getting "normal" results, we have to put it in the category of "Chronic Fatigue Syndrome."
Right, I hear you who say keep exercising: if you only knew that I wish it could be so.
I guess that I am saying that dreaming of a day when all of this CML stuff will go away, or that living with it day-to-day does eventually become completely acceptable given the alternative, or that gripping about it in order to deal with it: from my point of view that is exactly right.
There is no wrong way to deal with it.
Dream the dreams, go for it, accept it, do your best, make a wish and make it happen.
Cry. Love. Give in. Fight.
Aren't we wonderful, all together making the best of what we've been dealt?
I certainly think so. Congratulations, everyone. WE WIN, no matter what the doctors or family member say or don't say.
Yay us all. God bless.
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!