This is so discouraging. To be undetectable for 5 years (in JrsBoo's case) and 14 (sheesh, 14!) in AllTheseYears' case and then for the CML to come roaring back like that - I just don't understand it. The takeaway for me is, it doesn't seem to matter beans if you get to undetectable - you're either in the magic group that can quit from the very beginning or you're not. So much for the stem cell exhaustion theory! Everyone's all excited about immunotherapy, but first they'll have to show that the stem cells are annihilated - otherwise, it's just an easier way to treat this stupid chronic disease. I agree with Trey, I'm looking for ABL001 to be an improvement. If we have to do without a cure, at least we could lessen the side effects. How sad to hear of how good JrsBoo and ATY felt after being off the TKI! A glimpse of themselves from the old days, from the other side of the looking glass. I'm just so angry and frustrated. Trey, you call CML unpredictable. But I thought we had all these assurances that hitting CCyR meant we were safe from progression, or that once you're MMR you have it made in the shade - things will stay the same (bad enough, but still) If you've been undetectable for 10 years, and your number starts coming up WHILE YOU'RE STILL TAKING THE TKI isn't that proof that CML in the age of TKI's is actually no different than all the other cancers after all - they eventually all become resistant to treatment?
Yes, the shock was bad. I only really got 2 weeks of my old self. But boy did that feel good. I am afraid I am one of the super sensitive ones, and the Sprycel actually kicks me into disabled mode, regardless of the amount.
I am super lucky, my husband works for the railroad and between that amazing insurance and the medicaid I get for being disabled, and the tricare that kicks in alongside that, I am completely covered financially other than a $50 copay once every 3 months. It wasn't always the case, and I had to declare bankruptcy early on.
The emotional rollercoaster has been a blast too! I have lost so many friends, who just can't handle the chronicness of all of this.
I wouldn't wish this diagnosis on anyone.
Sorry, wish I was more upbeat, but this setback is just too new. And it sucks. A lot.