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Still MMR!!


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#1 hannibellemo

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Posted 08 November 2010 - 07:09 PM

I promise I won't do this every time but this is my first PCR since MMR. The lab drew blood last Wed., went to Mayo by courier that day, had my results today - not bad! I essentially stayed the same .08 down from .09 (International scale). I'll take it! This the first time I've had my blood delivered. In the past it's always been drawn at the testing lab, Mayo -  wondered if it would affect the numbers.

Nov. 16 I'm having sinus surgery - ethmoidectomy on my left anterior ethmoid sinus. I debated and debated and don't want to live like this the rest of my life - I don't have headaches every day anymore but they are always just waiting in the wings. Dr. G, ENT at Mayo, believes that this will help drain my left frontal sinus (almost totally occluded) so I'm giving it a go. They will do it laproscopically (I'm not sure that is the correct term because there will be no external incision anywhere) and it takes about 1 1/2 hours, recovery is one to two weeks depending. I'm going for two!

Did I read in a post here today that "20 - 30% of those of us with CML will NOT reach PCRU"? I thought it was the other way around and that it was more like only 15 - 20% WILL reach PCRU. Of course, that statistic is referring to Gleevec only as I recall and the second and subsequent generation TKIs may blow that out of the water. Just wonder because I've been driving myself nuts trying to find it again.

Pat


Pat

 

"You can't change the direction of the wind but you can adjust your sails."

DX 12/08; Gleevec 400mg; liver toxicity; Sprycel 100mg.; CCyR 4/10; MMR 8/10; Pleural Effusion 2/12; Sprycel 50mg. Maintaining MMR; 2/15 PCRU; 8/16 drifting in and out of undetected like a wave meeting the shore. Retired 12/23/2016! 18 months of PCRU, most recent at Mayo on 7/25/17 was negative at their new sensitivity reporting of 0.003.<p>


#2 reedgirl

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Posted 08 November 2010 - 08:14 PM

Pat,

  By all means, share the great news!!!  This is what we all need to read, it's so encouraging reading this about someone!  Congratulations to you, too bad you couldn't find a better way to celebrate other than surgery, although being a fellow sinus sufferer I can understand your desire for relief!  I pray the surgery is successful and you will have a quick recovery!!!

Audrey



#3 Trey

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Posted 08 November 2010 - 10:37 PM

Glad to see that Sprycel is your friend.

The stats on PCRU (15 - 20% achieve it) were for Gleevec only, and based on about 5 years of data.  The longer the original Gleevec IRIS Trial group stays on Gleevec, more of them reach PCRU each year, so the stats are still getting better just for Gleevec.  And with Tasigna and Sprycel the PCRU stats are getting even better.  The stats are not very well recorded on this issue, so no one knows exactly.  But TKI drugs continue to work better over the longer term for most people.



#4 Tedsey

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Posted 08 November 2010 - 11:14 PM

Yea Pat!  And why did my font just change?!?!?!  Well, a tribute to you and sustaining MMR!  Please keep on sharing the good news.  I am always happy to hear you are doing well.  May the surgery fix things and may you recover quickly.

All the best,

Tracey 



#5 PhilB

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Posted 09 November 2010 - 04:17 AM

Don't know if this cut and paste will work, but definitely 'happy little dance' time.  Congratulations Pat

No, it didn't work so you'll just have to imagine the dancing squirrel I was trying to include!






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