62 replies to this topic

[simone4]

Tedsey, thanks for well wishes.  I came home from the oncologist's lab yesterday

and fell into bed. This worry has taken it's toll on me.  I wish I had never heard the

letters PCRU.  When you have a positive PCR, then it is made worse.

Your word of encouragement about Sprycel made me feel better.  I just

hope I don't have to make the change.  But I have to make a tough decision

if it comes to that.

I am, however, glad it has made a difference in your life.  You sound good.

Simone

[CallMeLucky]

Simone,

You bring up such an interesting point.  When you are on the down slope you are hopeful and excited but when you hit the bottom and have no where to go but up it can wear on you, particularly if you don't hold it.  There is such a feeling of failure when you go from being negative to positive.   The reality is that nothing may have changed given the way TKI drugs work and the sensitivity of the test.  There is a part of me that wonders if I just took the drug and never did another test would it make a bit of difference.  I am hopeful your next test shows a downward move.  If it turns out you have to switch to Sprycel I wouldn't fear it too much, like Gleevec it has its issues but overall I hav eto say that I feel better on Sprycel than I did on Gleevec.

[Tedsey]

I think it isn't unrealistic to expect to go in and out of PCRU.  Until we can fit the drug and dose perfectly to an individual, as long as we do not go over a log after achieving PCRU, the result is probably the same.  Don't know if my latest first 0 was because of a sample that sat too long (sent out to Jersey from Chicago) or a machine error.  It is hard to accept that my value is going to stay at zero.  And when it goes up, I know I will feel horrible (what a viscous circle--how do you escape?).  I know I will feel exceptionally horrible because I have endured so much at a full dose and it has taken so long to get a low PCR on a full dose.  I am going to try very hard to adopt the mindset that for now 0 is still a value, but at the limit of the test---and I will go in and out (reasoning due to my journey with CML).  My greatest dream for all of us is that a sustained zero over many years really means 0 leukemic cells or a low PCR = outliving the disease.  Let's all agree to be happy if noting goes over a log.  Heh, heh, is that possible?  Nevertheless, I am very open to comfort anyone who posts about their anxiety about losing response no matter how often they post.  Totally get it!  Uggggh!