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Question for Trey? Purrrrrty please??? And anyone else:)

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#1 Frogiegirl

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Posted 01 January 2015 - 10:11 AM

Hi Trey, I wanted to find out my starting percentage(BCR-ABL) to see how far I had come and called up to my nurse to get the answer. They told me during my BMB performed at diagnosis that 20 out of the 20 cells that were tested all tested positive for the 9:22 mutation.....meaning my percentage was 100%. But I had no blasts? does that sound right to you? forgive me for my non medical lingo, still all new to me ;) the nurse said that she didn't realize how far I had come from diagnosis because they don't always look back that far...she's kind of an air head like me.....You were kind enough to comment on my results I posted about a week and a half back and I appreciate that more then you know! Your a GEM! (Refresher) my BCR-ABL international scale % was 0.0072 on 12/15/2014 :D


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.


#2 Trey

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Posted 01 January 2015 - 01:36 PM

You have certainly done very well so this should not be a concern.  As for the nurse helping you with this issue, she has mixed two tests which will not provide a real answer, but she did provide some useful data.  But again, the good news is you should not care where you started since you have done so well.  That is ancient history.

 

But in case you are still reading.....

 

The nurse said you had 20 out of 20 cells leukemic at diagnosis.  That is the Bone Marrow Biopsy cytogenetics test which looks at 20 actual white blood cells from the marrow.  These must be cells at a specific phase of dividing in order to display the chromosomes in a way that is visible to the eye under a microscope.  If the Philadelphia Chromosome is present, the cell is leukemic; and this was the case for all 20 cells examined.  So your BMB was 100% positive at diagnosis just like most of us. 

 

The PCR is a different test entirely and does not relate mathematically to the BMB test, although in general both test results decline as we respond favorably to drug treatment.  If a PCR was done at diagnosis (probably was) then ask  for the result and you will have your answer.  If the PCR was not done at diagnosis, then you will not know for certain, but you can look at the first PCR test done (maybe at 3 months) and see the progress from there, started at X and is now at .0072% IS.  Ribbit...ribbit.

 

This explains frog PCRs in plain english:

https://www.youtube.com/watch?v=ZNtTGpMUOdI



#3 Frogiegirl

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Posted 01 January 2015 - 03:02 PM

BAHAHAHAHAAA!! :wacko: That video was SUPER informative Trey!!! LMAO! my five year old was watching over my shoulder and said "what the heck are they saying mom???"""" I am going to inquire as to the PCR at the beginning of this mess :huh: Thanks so much for taking the time to comment, ......Don't clap just send money?????  I may need to switch nurses as well :angry:


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.


#4 Antilogical

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Posted 01 January 2015 - 04:24 PM

Need I say it?

This thread has been ... wait for it ... RIBBITING.

(Don't hate me.)


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.


#5 hannibellemo

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Posted 02 January 2015 - 08:44 AM

Groan!   :rolleyes:


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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