Jeannie, I did not realize you have been on sprycel for 9 years!!! I did not 
know it was in trials back then...wow...you are my hero....I am sorry about 
your side pain..Tasi did give me diabetes overnight...blood sugars soared...but 
went back to normal on sprycel...yet since that 6 months on Tasi I have had to 
watch all sugar intake so I stay well..just with food and movement.. But I have 
no doubt it affected my pancreas. 
You are my hero today....inspiring....as I have been on sprycel 3 years this 
week. 

Hope you are having a good day and somehow that pain resolves in your side.  
Have you found anything that helps your headaches..or pre empts them? Beth



-----Original Message-----
From: ICANDOALLTTC <[email protected]>
To: cmlhope <[email protected]>
Sent: Wed, Nov 20, 2013 4:09 pm
Subject: Re: [CMLHope] PCR results for Peg and all



Hi Peg,
Good luck on your journey with Tasi.  As you know, my journey with it was not 
good.  It did a good job of lowering my counts but then I had to have blood 
transfusions so keep a good eye on your blood counts.  Starting Tasi started my 
side pain, and I was tested for pancreatitis, test showed negative, but I think 
it did something to my pancreas.  I was on Tasi for a few months and then it 
just quit working, but others on it are doing great! 
 
My headaches are worse on Sprycel, but I'm sure they all contribute to some 
type of headaches.
In answer to your PCR results my last one was 0.00038068 and my onc assures me 
I am in complete cytogenetic remission.
My blood counts were good also with just a few out of range.
The test calls this the BCR able ratio.  The one before this one was 0.0026.  I 
am on 100 mgs Sprycel daily.  This test results say I am in complete 
hematological cytogenetic remission.
I have been on Spycel since Sept 2004.
Make sure to follow all the guidelines for taking the Tasi. and good luck to 
you.
Blessings
Jeanie<3
 

In a message dated 11/19/2013 2:29:16 P.M. Eastern Standard Time, 
[email protected] writes:

Okay, so someone help me out with my latest results...I have been zero for so 
long that I don't know exactly what this means.  

After being zero for several years, my results starting coming back trace for 
the last few months. (We PCR monthly) We were mucking around with the TKI dose 
so the change from zero to trace was not too surprising.  The trace level was 
too low to count, so no number.  The one prior to this month was 0.00019 Ratio, 
IS 0.0157%, but because they sent it to the wrong lab it is really not useful 
or comparative, just kind of alerted me that there is a difference between 
Ratio number and IS number. This month, back at the right lab, it is now 0.053. 
 This lab does not use the International Scale (IS), so this number has no 
adjustment...it is simply the BCR-ABL/ABL ratio.  

So, I'm feeling a bit stupid, but, since everything I can find that explains 
level changes now uses the IS, and this is NOT an IS number, does this still 
mean that in going from 0.0000 to 0.053 I have just had a two log increase? And 
if the error factor is 0.5 to 0.05 is 0.053 really significant or can I worry 
about something else this week!  

By the way, just started Tasigna low dose, this is day two with a massive 
headache...anyone else?
Thanks!  peg


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