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#1 hannibellemo

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Posted 18 August 2010 - 09:06 PM

I had my checkup with Dr. L at Mayo this morning and amazingly he called this evening with my PCR results! Trey, bear with me, I know you hate the International Scale. In April 2009, using the International Scale, my PCR was 15.3% (I did not have a baseline PCR at time of Dx, 12/08).


In August 2009 because the initial PCR was so high I only had a FISH. Then it was found that I had liver problems with G and was switched to Sprycel in Oct. 09 after being off all drugs for 7 weeks. At my regular check up in Dec. only a FISH was done again because I had just started Sprycel and I had been off medications for almost 2 mos.


Now, I finally get to compare numbers - in April 2010 my PCR (again using the International Scale) was .2% with .1% being  MMR. Today my PCR was .09 - I have officially reached MMR! Thank you, Sprycel!


I like to compare this to golf and the ability to say that I had a birdie or a double birdie (as opposed to, say, a snowman) Unfortunately in my world of golf a snowman is way more likely than a double birdie, but I digress.


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 scuba

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Posted 18 August 2010 - 09:23 PM

Pat - I am confused.... you had a PCR in April at 15.3% and then in August you say it was so "high" you only had FISH.

What does that mean?


Diagnosed 11 May 2011 (100% FiSH, 155% PCR)

with b2a2 BCR-ABL fusion transcript coding for the 210kDa BCR-ABL protein

 

Sprycel: 20 mg per day - taken at lights out with Quercetin and/or Magnesium Taurate

6-8 grams Curcumin C3 complex.

 

2015 PCR: < 0.01% (M.D. Anderson scale)

2016 PCR: < 0.01% (M.D. Anderson scale) 

March        2017 PCR:     0.01% (M.D. Anderson scale)

June          2017 PCR:     "undetected"

September 2017 PCR:     "undetected"


#3 Trey

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Posted 18 August 2010 - 09:56 PM

It's a Cinderella story (as in Caddy Shack, speaking of golf analogies).

http://www.youtube.com/watch?v=bg8lSyGavc4



#4 hannibellemo

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Posted 18 August 2010 - 10:01 PM

Mayo has a different philosophy about doing early PCRs. Generally, they don't automatically do them everytime until the FISH is less than 1%. They also do FISH that can check 6,000 cells vs the normal 200-300 (Trey has a problem with this because he questions the sensitivity).

So, the bottom line is I haven't had a PCR every three months although that will now be my standard.

My 'so high' was based on the reasoning above not on the actual number.

I don't understand the ability to have a PCR above 100% on the International Scale - I simply cannot wrap my arms around that concept. I hope Trey gets back to you so he can put it in perspective.

Do I understand you correctly, you have had 3 PCR tests in 3 months? This is very early days for you Michael, give Gleevec (or one of the other TKIs) time to do it's job.

Good luck!

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>


#5 hannibellemo

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Posted 18 August 2010 - 10:06 PM

One of my all time favorite movies - just watched it again last week!

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>


#6 Trey

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Posted 18 August 2010 - 10:15 PM

Best movies of all time:

1) Caddy Shack

2) Groundhog Day

Really, after those two, nothing else compares....even if you use some fancy International Scale for movies.



#7 PhilB

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Posted 19 August 2010 - 04:46 AM

International Scale, Trey, Groundhog Day....

Congratulations Pat.  Brilliant, brilliant news.  I like the Golfing analogy too.  Maybe CHR = par, CCR = a birdie, MMR an eagle (double birdie) and PCRU an albatross (triple birdie).  One thing is for certain, you had plenty of people on here shouting 'Get in the hole!'



#8 hannibellemo

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Posted 19 August 2010 - 06:43 AM

Thanks, Phil! It's a great feeling!

Duh, I could not think of the term for "double birdie" and I didn't even know there was a term for triple birdie! But then, why would I? Double, triple (or higher) boogie are terms I can relate to!

There must be a reason that New Jersey is called the Garden State. Have you discovered it?

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>


#9 hannibellemo

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Posted 19 August 2010 - 06:48 AM

Trey, It's a tradition in our home - every Feb. 2 we watch Groundhog Day!


Pat

Message was edited by: hannibellemo


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>


#10 cherylannes

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Posted 19 August 2010 - 04:05 PM

Congratulations Pat!

Have a wonderful weekend!

Cheers!



#11 simone4

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Posted 19 August 2010 - 06:40 PM

Pat, congratulations. You've have been in several sandpits, but you

have gotten out of the bunkers each and every time. Hope for continued

success. ( I had to look up these golf phrases so as to keep with the metaphor

of the day. )

Take care and celebrate this weekend. Go sailing. Now that is

a novel idea, right?



#12 Tedsey

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Posted 20 August 2010 - 12:22 AM

Score!  Awesome.  Glad to hear the good news!



#13 hannibellemo

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Posted 20 August 2010 - 08:46 AM

Thanks, everyone for celebrating with me! To keep the golf analogy going for one more round - I'm not heading to the 19th hole yet, I know I have many more rounds to go before I can truly say I'm a Master's level player. 

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>





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