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Wooo Hooo PcrU


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#1 Lori's okay

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Posted 01 October 2012 - 11:28 AM

Last Friday met with Onc, and it is true!  Undetectable on PCR!!  So hoped this would happen.

Thank you millions to all of you on this board!!!  I was so scared at the first.  This has been my go to place for reliable information and comfort.  Thank you so much!! Thanks for sharing your good times and the bad and a special shout out to Trey for amazing expertise. 

The stats:  DX Oct. 2011  WBC highest at 17K  15/15 cells Ph+

Started Tasigna Dec 2011 at 600, reduced to 300 then to 450.  Been on 450 the last few months.

CBC is all in normal ranges. 

Side effects still here, mostly fatigue and ultra sensitivity to mosquito bites.  But so livable and feeling better every few weeks.

A side note:  the reason my sign in name is A_1derful_Wrld is this:  The night I decided to join this board I was so afraid of all this and so consumed with it, terrified to take that first pill.  As I worked on signing up, on Pandora the song that came up was Louis Armstrong singing What a Wonderful World.  As he sang:  I see trees of green.....red roses too....and so on....it was just what I needed to hear at that moment.  It reminded me life would go on and that all those wonderful parts of life were still there, even if I could not see them at the moment.  It's been a good reminder every time I log on.

Love to you all,

Lori

Here's the song:

http://youtu.be/E2VCwBzGdPM


DX 09-2011 PCR 8.08 not IS WBC 17 , Began Tasigna 600mg  

in 2012 Tasigna 450mg/day ,in 2013-2017 Tasigna 300mg/day

DATE/PCR

09-11/ 8.08 not IS

03-12/ 0.054 not IS

06-12/ 0.035 not IS

09-12/ PCRU, 01-13/ PCRU

4-13/ 0.042 IS

7-13/ 0.014 IS

11-13/ PCRU, 04-14/ PCRU

8-14/ 0.006 IS

PCRU: 12-14/ 05-15/ 10-15/ 02-16/ 

09-16/ 02-17/ 09-17/ 

10-17 tapered off 

11-3-17 Stopped Tasigna

1-15-18 still PCRU

 


#2 alexamay09

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Posted 01 October 2012 - 11:34 AM

Wonderful news Lori - really pleased for you.

alex

xx



#3 TeddyB

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Posted 01 October 2012 - 11:39 AM

Congrats, i hope i can be so lucky



#4 Rissa

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Posted 01 October 2012 - 11:53 AM

Great news Lori!!! 



#5 KerriD

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Posted 01 October 2012 - 12:18 PM

Congrats!  You are correct....it is a wonderful world.



#6 mariebow

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Posted 01 October 2012 - 03:49 PM

Congrats, I am so happy for you. Looking forward for one day I will get there dx Jan 12. 



#7 cam_kris

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Posted 01 October 2012 - 04:49 PM

CONGRATULATIONS!!!! That is absolutely awesome!!  I am praying I have a good handle on it next month!!  Bone Marrow Oct 15th results Oct 24th  

dx march 26 2012 on Tasigna 600mg with only side effect of  fatigue. 

you said you were dx last year.  do you remember where you were at 6 months?  That is what i will be at the time of next bm in October.

Again, I am so happy for you!! 



#8 LivingWellWithCML

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Posted 01 October 2012 - 07:12 PM

Congratulations!


Dan - Atlanta, GA

CML CP Diagnosed March 2011

Gleevec 400mg


#9 Lori's okay

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Posted 01 October 2012 - 07:25 PM

Thanks everyone, it's so fun to celebrate with those who know!!

Cam_kris, I was at 8.8% PCR at dx, and I think at 6 months it was 0.035%.  The big drop was at 3 months to 0.056% and zero FISH. 

Good luck to all!  I know the zero FISH is perhaps more important, but this does feel good.

Lori


DX 09-2011 PCR 8.08 not IS WBC 17 , Began Tasigna 600mg  

in 2012 Tasigna 450mg/day ,in 2013-2017 Tasigna 300mg/day

DATE/PCR

09-11/ 8.08 not IS

03-12/ 0.054 not IS

06-12/ 0.035 not IS

09-12/ PCRU, 01-13/ PCRU

4-13/ 0.042 IS

7-13/ 0.014 IS

11-13/ PCRU, 04-14/ PCRU

8-14/ 0.006 IS

PCRU: 12-14/ 05-15/ 10-15/ 02-16/ 

09-16/ 02-17/ 09-17/ 

10-17 tapered off 

11-3-17 Stopped Tasigna

1-15-18 still PCRU

 


#10 Antilogical

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Posted 01 October 2012 - 08:48 PM

Congrats to you on the great results, and thanks very much for the link.  What a nice nostalgic moment......


Dx: Sudden severe anemia detected 07/2011, followed by WBC spike. CML Dx 02/2012.

Rx: 03/2012-Gleevec400.  Reduced 02/2013 to Gleevec300 due to side effects (low blood counts).

Response: PCR-Und within 7 mo. on G400. Maintained MMR4-MMR4.5 on G300. PCR-Und since 02/2016.


#11 Tedsey

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Posted 02 October 2012 - 11:36 AM

What great news!  Thanks for sharing.  Here is to holding PCRU until you are very old and gray!

Teds



#12 Susan61

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Posted 02 October 2012 - 05:19 PM

Hi Lori:  Congratulations!!!!   With all the crazy things going on eveyday in this world, we need good news like this, along with Louie Armstrong Singing his famous song.  Thanks for Sharing.

God Bless

Susan






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