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I Finally Gotta Zero!


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#1 Tedsey

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Posted 21 November 2011 - 07:48 PM

After 2 years and tons of ups and downs, I finally got a PCR with a zero in it!!!!!!  My last one came in at "b2a2 0 .066% and others entirely negative" (quoted my onc). 

Since we tend to like to look at each other's numbers, here are my numbers*:

5/17/105/21/108/16/1012/13/104/11/116/6/118/8/1111/7/11
13.739% (BMA)9.378%4.921% (first PCR after switch to Sprycel from Gleevec)1.334% (BMB & CCR).684%.135%.283% (BMB).066%

*I did not have a reliable PCR at diagnosis on 11/26/09.  I could not get one until I switched oncs six months later.  So, my first quantifiable PCR was six months after I was diagnosed.

BTW, the PCR machine they use at LabCorp detects 1:100,000, (my onc made a mistake of telling me it was 1:200,000 a while back).  I feel this makes my PCR look lower than what it may actually be.  But since I think the PCRs have all been done on the same machine, this trend seems reliable.  The limit of assay is <0.001%. 

All PCRs, but one, (5/21/10), done on peripheral.

I have a lot to be thankful for during our U.S. Thanksgiving holiday (and the unsettling anniversary that now always comes with it).  But maybe this story will have a happy ending after all.

Wishing a long lifetime of thanksgivings to all of us on this board wherever we are in the world,

Teds

P.S. Who wants to come to Chicago for chocolate martinis? 



#2 Judy2

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Posted 21 November 2011 - 07:57 PM

Tedsey. CONGRATULATIONS!!! Wishing you many more healthy and happy Thanksgivings.

Judy



#3 janner25

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Posted 21 November 2011 - 08:03 PM

Tedsey - SOO happy for you!!!!!!  That is awesome news!!!!  Keep up the good work!  Wahoo!

Janice



#4 scuba

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Posted 21 November 2011 - 08:30 PM

Tedsey,

Cool.

Michael


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"


#5 scuba

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Posted 21 November 2011 - 08:31 PM

Tedsey,

Nah....  Very cool.

Michael


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"


#6 scuba

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Posted 21 November 2011 - 08:31 PM

Tedsey,

No..... Way cool.  That's way cool.

Michael


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"


#7 Trey

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Posted 21 November 2011 - 08:32 PM

Teds,

You are running out of excuses for why your children will end up motherless.  But I'm sure you still have a few in reserve that you intend to spring on us when the timing is just right. 

We are not just happy for you -- we finally feel like the "Tedsey Soap Opera" will not end like Madame Butterfly after all, but will become more like the Sound of Music with Tedsey spinning in glee on some hill near Chicago singing 

http://www.youtube.c...h?v=UkhisRY3RRQ

Or "On Top of the World":

http://www.youtube.c...feature=related

But possibly:

http://www.youtube.c...feature=related

How about:   

http://www.youtube.c...feature=related

http://www.youtube.c...h?v=-sVYv3vtE08

http://www.youtube.c...feature=related

Or even:

http://www.youtube.c...feature=related

http://www.youtube.c...feature=related

But really the "Turtles":

http://www.youtube.c...h?v=Zv85y08aA2w



#8 scuba

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Posted 21 November 2011 - 08:32 PM

Tedsey,

I'm so proud of you.  I really am.

(p.s.  Sprycel did it....eh?)

Mr. Michael


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"


#9 scuba

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Posted 21 November 2011 - 08:33 PM

Sorry Trey .... she lives in Chicago.  No sound of Music for her.


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"


#10 Guest_billronm_*

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Posted 21 November 2011 - 08:58 PM

Dear Tedsey,

    Yahoo Whopee,

I,m on my way for a chocolate martini !                    Billie

Trey Great choice of songs.



#11 GerryL

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Posted 21 November 2011 - 09:01 PM

Congratulations Teds, it has taken you awhile, but turtles do get there in the end.



#12 Dina

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Posted 21 November 2011 - 09:04 PM

Yes Yes Yeeesssss  Congratulations....so happy for you!



#13 pammartin

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Posted 21 November 2011 - 09:08 PM

Get those martinis ready, am headed your way!  Congratulations!  How incredibly awesome. 



#14 pammartin

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Posted 21 November 2011 - 09:09 PM

Trey, I adore your humor.



#15 scuba

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Posted 21 November 2011 - 09:17 PM

To build on Trey's contributions ...

How about:

http://www.youtube.c...h?v=1HRa4X07jdE


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"


#16 scuba

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Posted 21 November 2011 - 09:40 PM

Hey Teds - your mailbox is full.


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"


#17 SB3

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Posted 21 November 2011 - 09:46 PM

Congratulations! This makes me so happy to see, particularly since I'm also on Sprycel and I seem to following in your footsteps with regards to dealing with low blood counts. Your success gives me such hope. Happy, happy Thanksgiving to you!



#18 hannibellemo

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Posted 21 November 2011 - 10:53 PM

Woohoo, Teds, way to go!

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>


#19 Pin

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Posted 21 November 2011 - 11:11 PM

That's such great news Tedsey!   I hope you have a lovely Thanksgiving holiday :)


Diagnosed 9 June 2011, Glivec 400mg June 2011-July 2017, Tasigna 600mg July 2017-present (switched due to intolerable side effects, and desire for future cessation attempt).

Commenced monthly testing when MR4.0 lost during 2012.

 

2017: <0.01, <0.01, 0.005 (200mg Glivec, Adelaide) <0.01, 0.001 (new test sensitivity)

2016: <0.01, <0.01, PCRU, 0.002 (Adelaide)

2015: <0.01, <0.01, <0.01, 0.013

2014: PCRU, <0.01, <0.01, <0.01, <0.01

2013: 0.01, 0.014, 0.016, 0.026, 0.041, <0.01, <0.01 

2012: <0.01, <0.01, 0.013, 0.032, 0.021

2011: 38.00, 12.00, 0.14


#20 janne

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Posted 21 November 2011 - 11:50 PM

Yee haw ! Way to go ! I am soooo ready for my chocolate martini on behalf of whoever is wanting to partake ! And no Trey, I do not think they make your butt look fat. Congrats Teds !!!!


Dx'd: 8/2008. Started Gleevec 400 mg 11/08. 

Drug break 2011.

Started Tasigna 4/11 450 mg.

Reduction to 300 mg Tasigna 1/2012.

PCRU 9/2012.

12/2012 Detectable.

PCRU 4/2013 through 3/2015. (Reduced to 150 mg 7/2014)

12/2015  ? slightly detectable at probably less than 0.01% per Mayo Clinic.

4/2016 PCRU. Still at 150 mg Tasigna.

 

CESSATION: stopped treatment 7/20/2017. 

9/6/2017:  barely detectable at 0.01%. 

12/11/2017: PCR at 0.09% (did not do the monthly PCR testing.) 

12/18/2017: Inevitable call from Onc. Started back on Tasigna at 150 mg. (Considering Sprycel low dose.) 





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