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A milestone in a continuing journey - PCRU!!!!


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#1 janekaye

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Posted 12 May 2011 - 03:51 PM

Although I post on the boards infrequently these days, over the past several years, so many of you have been helpful to me (sometimes unknowingy) and sometimes because I asked a question and got lots of concerned answers.

So I had to share with you that yesterday when I visited my oncologist, he handed me my latest test results and the first sentence read "Quan. PCR, cell-based BCR-ABL/ABL Ratio = 0.000.  There is no BCR-ABL fusion transcript detected by PCR." I actually just kept saying "this can't be right, I can't believe it!"  The date was almost exactly 2 years and 8 months since my dx, and I think I had decided that I would always be one of those people with CML who "hovers" somewhere under 1.000 for years (not a bad option, either), so I was elated to see those numbers. What will be interesting now is that early this week I overnight-shipped blood samples to Dr. Cortes at MD Anderson for similar testing.  I can't wait to see what those results show.

In the meantime, my husband and I went out to dinner and celebrated and I didn't even count the beers!

So to anyone out there who's impatient and an "overachiever" like me, just know that as Trey always says, the turtle can still cross the finish line - he/she just might take a little longer.

Thanks for all the ongoing support I get from the discussions and individuals on this board.  I will keep visitig regularly and contribute when I think I have something worthwhile to offer.

-janekaye



#2 CallMeLucky

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Posted 12 May 2011 - 04:15 PM

That is really great news, thank you for sharing, and best wishes for continued success with your treatment and test results.


Date  -  Lab  -  Scale  -  Drug  -  Dosage MG  - PCR
2010/Jul -  MSKCC  -  Non-IS  -  Gleevec  - 400 - 1.2%
2010/Oct -  MSKCC  -  Non-IS  -  Gleevec  - 400 - 0.25%
2010/Dec -  MSKCC  -  Non-IS  -  Gleevec  - 400 - 0.367%
2011/Mar -  MSKCC  -  Non-IS  -  Gleevec  - 400 - 0.0081%
2011/Jun -  MSKCC  -  Non-IS  -  Gleevec  - 400 - 0%
2011/Sep -  MSKCC  -  Non-IS  -  Gleevec  - 400 - 0.00084%
2011/Dec -  MSKCC  -  Non-IS  -  Gleevec  - 400 - 0%
2012/Mar -  MSKCC  -  Non-IS  -  Gleevec  - 400 - 0.004%
2012/Jun -  MSKCC  -  Non-IS  -  Gleevec  - 400 - 0%
2012/Sep -  MSKCC  -  Non-IS  -  Gleevec  - 400 - 0%
2012/Dec -  MSKCC  -  Non-IS  -  Sprycel  - 100 - 0%
2013/Jan -  Quest  -  IS  -  Sprycel  -  50-60-70  - 0%
2013/Mar -  Quest  -  IS  -  Sprycel  -  60-70  - 0%
2013/Apr -  CUMC  -  Non-IS  -  Sprycel  - 50 - 0.036%
2013/May -  CUMC  -  Non-IS  -  Sprycel  - 50 - 0.046%
2013/Jun -  Genoptix  -  IS  -  Sprycel  - 50 - 0.0239%
2013/Jul -  Genoptix  -  IS  -  Sprycel  - 70 - 0.0192%
2013/Jul -  Genoptix  -  IS  -  Sprycel  - 70 - 0.0034%
2013/Oct -  Genoptix  -  IS  -  Sprycel  - 70 - 0.0054%
2014/Jan -  Genoptix  -  IS  -  Sprycel  - 70 - 0.0093%
2014/Mar -  Genoptix  -  IS  -  Sprycel  - 100 - 0.013%
2014/Apr -  Genoptix  -  IS  -  Sprycel  - 100 - 0.0048%
2014/Jul -  Genoptix  -  IS  -  Sprycel  - 100 - 0%
2014/Nov -  Genoptix  -  IS  -  Sprycel  - 100 - 0.047%
2014/Dec -  Genoptix  -  IS  -  Sprycel  - 100 - 0%
2015/Mar -  Genoptix  -  IS  -  Sprycel  - 100 - 0%
2015/Jun -  Genoptix  -  IS  -  Sprycel  - 100 - 0%
2015/Sep -  Genoptix  -  IS  -  Sprycel  - 100 - 0%
2015/Dec -  Genoptix  -  IS  -  Sprycel  - 100 - 0%
2016/Mar -  Genoptix  -  IS  -  Sprycel  - 100 - 0.0228%
2016/Jun -  Genoptix  -  IS  -  Sprycel  - 100 - 0%
2016/Sep -  Genoptix  -  IS  -  Sprycel  - 100 - 0%
2016/Dec -  Genoptix  -  IS  -  Sprycel  - 100 - 0%
2017/Mar -  Genoptix  -  IS  -  Sprycel  - 100 - 0%
2017/Jun -  Genoptix  -  IS  -  Sprycel  - 100 - 0%
2017/Sep -  Genoptix  -  IS  -  Sprycel  - 100 - 0%
2017/Dec - Genoptix  -  IS  -  Sprycel  -  100 - 0%
 

 


#3 Trey

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Posted 12 May 2011 - 04:49 PM

http://www.youtube.c...YACKLhDHBY&NR=1

"Steady wins the race."

--Trey



#4 ChrisC

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Posted 12 May 2011 - 07:36 PM

Hi janekaye,

You did it! Congratulations, well done : )  And good work to your onc, who let you read it yourself. I'm especially happy for you, since as you say you never expected it to happen. Carry on!

ChrisC


Be alert, but not overly concerned.

 

• Dx Oct. 22, 2008, WBC 459k, in ICU for 2 days + in hospital 1 week

• Leukapheresis for 1 week, to reduce WBC (wasn't given Hydroxyurea)

• Oct. 28, 2008: CML confirmed, start Gleevec 400mg

• Oct. 31, 2008: sent home when WBC reached 121k

• On/off, reduced dose Gleevec for 7 months

• April 2009: Started Sprycel 100mg

• Sept. 2009: PCRU 0.000

• Sept. 2011: after 2 years steady PCRU & taking Sprycel 100mg before bed, quit Sprycel (with permission)

• Currently: still steady PCRU, testing every 6 months 🤗

— Fatigue, hearing loss continue, alas, but I prefer to think it is all getting better!

 

 


#5 Marnie

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Posted 12 May 2011 - 09:16 PM

Yea!!!  Congrats, JaneKaye!!  I'd have a glass of wine in your honor, but I'm still at contract negotiations. . .started at 8:00 this a.m.  It's now 8:15 p.m.  Gonna be a long, long night.

Happy, happy for you!!

Marnie



#6 janner25

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Posted 12 May 2011 - 09:49 PM

Wonderful news!!!!  Congratulations!



#7 eithne01

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Posted 13 May 2011 - 03:36 AM

Well done.Love hearing all the positive on this site.here's hoping my turtle crosses the line

in july!



#8 grannyd

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Posted 13 May 2011 - 06:08 AM

Congrats on the fantastic report!!! My prayers is for all of us to reach this milestone---and stay there!!!!! Prayers to all,. granny d



#9 hannibellemo

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Posted 13 May 2011 - 06:30 AM

janekaye,

Fantastic news indeed. I know it hasn't been smooth sailing and I'm thrilled for you!

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>


#10 Cathy

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Posted 13 May 2011 - 07:27 AM

Congradulations! Great news!

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 !!

 


#11 HeatherZ

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Posted 13 May 2011 - 07:39 AM

That is awesome news! Congratulations!

Heather - still waiting for my turtle to cross the line



#12 Taylor

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Posted 13 May 2011 - 08:22 AM

Awesome!  Great news.



#13 VickiW

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Posted 13 May 2011 - 08:36 AM

FANTASTIC!!!!

Another member of the "BIG 0" (better late than never) club!

(took me almost exactly 4 years~glad you beat me)

Ok, now, as initiation to the club, you must show us your best HAPPY DANCE


(mine was an Irish jig~hehehe)

Congratulations, Vicki


Dxd 2007

started on Gleevec switched to Sprycel 100mg in 2009

PCRU since 2011

20mg Sprycel every other day since Dec. 2014

Began TFR 4-18-16


#14 Tom_md

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Posted 13 May 2011 - 09:00 AM

That is SUPER! Congratulations!

Tom



#15 Happycat

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Posted 13 May 2011 - 02:30 PM

Congrats to you!

Traci



#16 Tedsey

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Posted 13 May 2011 - 06:54 PM

So happy to hear the good news!  Congrats and long life to you!

Teds



#17 janekaye

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Posted 13 May 2011 - 07:51 PM

Wow!  I was overwhelmed by all the replies I got to my post about reaching PCRU.  It just goes to show all of us that we really are a "community," and that we watch what happens to others and care about their ups and downs.  Good stuff!

Vicki, as far as the dance goes, you can watch Trey's selection from YouTube - I guess I'm going to have to do the "turtle dance," although I'm as Irish as they come.

I do think next week's results from MD Anderson will be interesting - Dr. Cortes, responding to my latest results, was pleased obviously, but reminded me (as once again Trey often does) that the results we get depend on the sensitivity of the test.  Different labs, different "wait" times before analysis by the lab, different times of the day for collection, sophistication of the testing materials and the lab, etc., etc., etc. --- it seems that a never-ending list of variables ultimately affect the results we see (and live with) from test to test.  My husband, an engineer, likes to refer to "measurement noise" when talking about all the differences that may occur in seemingly similar tests.

For now, I will just enjoy the moment --- which is something I tend to do quite well even when my counts are not at 0.000!  And I'll be thankful for all of you out there who shared in my good news!

- janekaye



#18 gark

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Posted 15 May 2011 - 11:27 AM

Good going there, Janekaye!  Pretty awesome, eh?  After almost 6 years on 800mg gleevec I finally just hit PCRU myself.  Still in schock about it.  My oncologist did deep nested testing and it came up undetectable still, so yippee!!   It is good to be alive!

-mark



#19 MomMom

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Posted 17 May 2011 - 11:11 AM

janekaye,

Great news.  Same as I got back in April.  We must have been dx'd about the same time.  Mine in July 2008 and I am just now PCRU.  I hope we continue on this same track.  Congratulations!!  There is nothing like seeing no detectable BCR/ABL and those zeros.  My doc always tells me results and then gives me a copy of all lab reports.  I've kept a file from the beginning.  It's interesting to look back through.  I wish us all the best - PCRU.

MomMom






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