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#1 Cathy

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Posted 15 March 2013 - 03:14 PM

HI all, well I've been on Sprycel 50 mg for about a 1 year now 1/2 dose since  my blood counts stayed so low. The past 2 PCR were up a little but we were just watching it for the past 6 months I was still within range that was okay. I just got my PCR from March 6th and my counts really jumped up .383 IS. So we are retesting within the month and doing mutation testing also.

My onc is great he is very experienced onc but not a specialist he is suggesting depending on what the test shows to make sure its not a lab error I may need to go see a specialist. I never miss a pill especially since I know I'm on a lower then standard dose.

I'm sure everything will be fine I'm just so darn disappointed it seems once a year I have something or a set back of some kind. I know there are lots of options and all just sharing. Since I know Scuba is also bouncing around a bit on his PCR I'm kind of wondering if lower dose keeps things at bay as much as they need to be sometimes.

past PCR .128

                .060  I think there was a 0 in front don't have test at work! LOL

                .383 %

Have a good weekend and save ST Patty's day all!

Cathy

DX 5/20/2010


Cathy

 

DX 5-2010  Started normal hydra then Gleevec for 9 months stopped working

Tasigna after 5 pills pancreatis  numbers jumped up quickly

Started Sprycel 100, 8-2010  for a 3 years went down to 50 mg numbers at one point really jumped up quickly

currently on 70 mg for last 2-3 years trying to get onc to reduce dose Numbers never stabilize never MMR till 4-2017 bearly and jump up and down in and out of MMR stayed MMR for 3 months then

After 6 years on sprycel fluid on both lungs, drained still have some fluid on lungs, and currently off drug 4 months now

numbers lower then ever go figure I've never been this low of a number 

last 2 tests .0686 and .0181 !!

 


#2 Trey

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Posted 15 March 2013 - 10:56 PM

It's hard to know when you don't know if you are accurately reporting the second result.  But overall it seems stable enough.  If you can raise the dosage it would be a good idea.  But if not you may be able to remain stable.



#3 Cathy

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Posted 16 March 2013 - 08:37 AM

TRey

The middle number was correct it was .0618%. I know its not terrible yet. But I lost MMR and the lab did a Fish on their own so if they were checking a Fish after all this time that worries me. It's just a big jump to me. And loosing MMR I don't like took me so long to get there.

So we are retesting and will see what the next PCR and mutation test shows.

Thanks,

Cathy


Cathy

 

DX 5-2010  Started normal hydra then Gleevec for 9 months stopped working

Tasigna after 5 pills pancreatis  numbers jumped up quickly

Started Sprycel 100, 8-2010  for a 3 years went down to 50 mg numbers at one point really jumped up quickly

currently on 70 mg for last 2-3 years trying to get onc to reduce dose Numbers never stabilize never MMR till 4-2017 bearly and jump up and down in and out of MMR stayed MMR for 3 months then

After 6 years on sprycel fluid on both lungs, drained still have some fluid on lungs, and currently off drug 4 months now

numbers lower then ever go figure I've never been this low of a number 

last 2 tests .0686 and .0181 !!

 


#4 thomaskk

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Posted 10 March 2014 - 04:57 AM

Hi

Hope you are doing well now ...When did you achieve MMR ( .1% IS ) 3 log reduction ?  How many months from DX ?

Regards

Thomas






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