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PCRU - Finally!

Started by August1 , Apr 22 2015 09:59 AM

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12 replies to this topic

#1 August1

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Posted 22 April 2015 - 09:59 AM

Hi everyone,

I just got my latest PCR results back and was very pleasantly surprised to see my BCR/ABL (IS) at 0.000%. The P210 BCR-ABL1 fusion transcript is NOT detected.

I was diagnosed back in August of 2012 and started on Gleevac and am now taking 100 mg of Sprycel. I switched due to mild GI issues not related to response.

I have historically been a very "slow and steady" responder. I reached CCyR at around 14 or 15 months and my last PCR (September 2014) was still up at 0.208% IS after about two years of treatment.

I was really just hoping to reach MMR with this latest test and never expected to see this. Of course, there is always the next test but for now I am beyond thrilled and just thought I'd share with the group.

Take care,

Bill

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#2 klf2013

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Posted 22 April 2015 - 10:44 AM

Congrats Bill! Love to hear this news!

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#3 pammartin

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Posted 22 April 2015 - 11:24 AM

Congratulations!!

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#4 Yougotafriend

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Posted 22 April 2015 - 11:29 AM

Way to go!!!

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#5 Frogiegirl

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Posted 22 April 2015 - 12:50 PM

Yay! !!!!! That is amazing news! I'm very happy for YOU AND your FAMILY as well. ..after all they are the backbone of our treatment. ..keeping us going and not wavering at all! Keep us posted! YAY!!!!!

Diagnosed Oct 2013 Started 600mg of Tasigna on Nov 4th. Lowered dose a few months later to 300mg due to side affects stayed here declining PCR until March 2015 small jump from 0.0072 to 0.0083 scarred my doc into full dose of Tasigna again 600mg(been miserable since) but reached PCRU 06/15/2015(next test) and have been there ever since. Hoping to have another little one. I have the support of my doc to go off anytime, just scared to jump. might go two years PCRU but he said it wont make much of a difference. I just figured I could possibly go into a trial while preggers if I got the two years behind me.

Nov 8th 2017 went off Tasigna

Dec 1st PCRU off TKI

Jan 5th PCR Detected .0625

Feb 1st PCR Detected .7815

Added 8-6 grams Curcumin daily in Feb

March 3rd PCR Detected 3.2646 YIKES!

stopped trying for baby after February reading. will start new TKI march 16th 2017 (Sprycel)

FYI I'm not done trying for my last little one.

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#6 hannibellemo

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Posted 22 April 2015 - 01:31 PM

Congratulations, very good news for all of us turtles out here!

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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#7 mlk210

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Posted 22 April 2015 - 04:19 PM

Congratulations!!! Great news!

7/2014 Diagnosed,8/14 Started 100mg Sprycel, 9/14 Thyroidectomy (thyroid cancer)

8/2015 Undetectable, 12/15 Plural Effusion (3 wk drug break)

1/2016 Started 70mg Sprycel, 3/16 Plural Effusion (4 wk drug break)

3/16 .014 after a wk w/o meds

4/16 Started 400mg Gleevec

4/16 Undetectable, 7/16 Undetectable, 10/16 Undetectable, 2/17 Undetectable, 5/17 Undetectable, 8/17 Undetectable

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#8 Billie Murawski

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Posted 22 April 2015 - 09:38 PM

Congratulations Bill, thanks for sharing, every post we get like yours really helps our newcomers and turtles.

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#9 Lisa Lisa

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Posted 22 April 2015 - 09:46 PM

Yes, congrats! This newbie loves to read success stories! Very happy for you, all the best.

Dx 2/2015 BCR-ABL1 (p210) 85.2% (IS) 3/15

22% 5/15 0.13% 6/15 PCRU attained 9/15

Initial dose Sprycel 100 mg 3/15 Lowered 80 mg 5/15 Lowered 50 mg 1/16

Note: dose lowered bc of side effects - not bc onc wanted to reduce dosage

Sprycel: Currently 50 mg per day - taken 10 pm

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#10 JPD

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Posted 22 April 2015 - 09:53 PM

Awesome. Turtle POWER

January 15: .53%

April 15: .78%

July 15: 1.1% - upped dosage to 400mg after this test

Oct 15: .85%

December 15: .28%

March 16: .29%

July 16: .34%

October 16: .11%

January 17: .081%

April 17: .055%

July 17: .135%

Oct 17: .008%

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#11 CMcLain

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Posted 22 April 2015 - 10:05 PM

Wonderful news indeed! Congratulations! I've been taking Gleevec since October 2010 and I'm still not PCR undetectable. I think I must be a turtle too. 🐢 Maybe I'll call myself a, "Ninja turtle". My 5 year old son would love that! Ha!
Just changed doctors and I'm now seeing Dr. Cortes at MD Anderson. I'm fairly certain he will switch my drug to Sprycel when my test results come back. We will see!
So nice to hear good news like yours Bill! 😊�'�🏻
Charissa

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#12 Gail's

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Posted 23 April 2015 - 02:33 PM

Nice! Enjoy the moment!

Diagnosed 1/15/15
FISH 92%
BMB 9:22 translocation
1/19/15 began 400 mg gleevec
1/22/15 bcr 37.2 IS
2/6/15 bcr 12.5 IS
3/26/15 bcr 10.3 IS
6/29/15 bcr 7.5 IS
9/24/15 bcr 0.8 IS
1/4/16 bcr 0.3 IS
Started 100 mg dasatinib, mutation analysis negative
4/20/16 bcr 0.03 IS
8/8/16 bcr 0.007 IS
12/6/16 bcr 0.002 IS
Lowered dasatinib to 70 mg
4/10/17 bcr 0.001 IS
Lowered dasatinib to 50 mg
7/5/17 bcr 0.004 IS
8/10/17 bcr 0.001. Stopped TKI in prep for September surgery.
9/10/17 bcr 0.006
10/10/17 bcr 0.088