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13 months in, on reduced tasigna. These results are making me nervous!

CML Tasigna reduced dose

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#1 Frogiegirl

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Posted 22 December 2014 - 10:50 AM

Not Sure how I feel about these results. I've been beating myself up. thought I would have zeros across the board....... from 10 months ago I was on a total of 300mg of tasigna daily. 3 months ago it was increased to 450mg daily of tasigna. I really thought I would hit that PCRU? sorry still learning the lingo! :lol: I would love any input, I have a hard time getting much feedback from my Dr. on whether this is good or not. oh also I noticed my monocyte% was high, but they mentioned nothing about it. should I be concerned?

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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 22 December 2014 - 05:50 PM

Those are great numbers -- very nearly undetectable.  Close to 4.5 log reduction which should eb the cutoff point where the lab calls it "0".  MMR in under a year and nearly PCRU at 13 months is well above average.  No reason the be nervous at all. 

 

Percentage of WBCs such as monocytes should not be used -- only use absolute numbers.  Percentages are misleading because the TKI drugs drive our neutrophils lower, so other WBC percentages are higher even if normal by absolute numbers.



#3 gerry

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Posted 22 December 2014 - 07:16 PM

I can remember wanting to be MMR at 5 months. lol



#4 CallMeLucky

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Posted 22 December 2014 - 10:23 PM

You're on a nice downward trend and almost undetectable. Great 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%
 

 


#5 Frogiegirl

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Posted 24 December 2014 - 10:29 AM

Thank You Trey, Gerry and Callmelucky! I figured the results were ok, just was unsure on how great? :huh: My doc has been out of the country for my last two visits, and I feel rushed when I'm there .....and the good ol' chemo fog makes me forget questions I should ask :rolleyes: I wonder if PCRU for my next visit in march is to much to ask? I am SOOOO thankful for this Group of gems to bounce my questions off of :)


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.


#6 tazdad08

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Posted 05 January 2015 - 12:35 PM

Glad to see that the numbers are staying down! Great news. The longer that you are on a lower dose, the more it seems like the side effects ease up. Good luck and stay positive!


Diagnosed in September 2011. Tried one year of Sprycel. Had great response. Became undetectable in a few months. Changed to Tasigna hoping for less side effects. Self medicated myself down to 20% dose and held for 3 years before becoming detectable again. It has been a journey that has helped me realize what life is about! I am all about a balanced life. I firmly agree with my decision to lower my dose. What is life if you aren't living? Mine will never be the way it was, but it is going to be as good as I can make it! Drs PRACTICE medicine, we can guide our dr to help us with a better life! Don't settle until it's acceptable to you!


#7 rcase13

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Posted 05 January 2015 - 01:24 PM

Wow I am 600mg/day, why did they switch you to 300mg? Congrats on your numbers. pretty much undetected on a lower dose. That is awesome.

The less we have to take the better I say!

10/01/2014 100% Diagnosis (WBC 278k, Blasts 6%, Spleen extended 20cm)

01/02/2015 0.06% Tasigna 600mg
04/08/2015 0.01% Tasigna 600mg
07/01/2015 0.01% Tasigna 600mg
10/05/2015 0.02% Tasigna 600mg
01/04/2016 0.01% Tasigna 600mg
04/04/2016 PCRU Tasigna 600mg
07/18/2016 PCRU Tasigna 600mg
10/12/2016 PCRU Tasigna 600mg
01/09/2017 PCRU Tasigna 600mg
04/12/2017 PCRU Tasigna 600mg
10/16/2017 PCRU Tasigna 600mg
01/15/2018 PCRU Tasigna 600mg

 

Cancer Sucks!


#8 Frogiegirl

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Posted 05 January 2015 - 04:32 PM

Rcase, I could not agree more! the Less the better! I asked to be reduced because the side affects were seriously kicking my butt! I'm a tough gal, and have a very physical job, and the aches and pains and handfuls of hair were taking its toll on me :angry: I didn't want to switch TKI's either because I was having such a good response to Tasigna. I was on 300mg for 6 months and achieved MMR. He then bumped me up to 450mg to see if I could better tolerate it. But honestly I'm ready to go back to the 300mg. Im going to ask him in march if I can go back down ;) Hoping to be PCRU by then....fingers crossed :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.


#9 Gerry - CML

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Posted 05 January 2015 - 09:19 PM

I went onto 300mg Gleevec after a year PCRU and maintained PCRU. For some of us, a lower dose works as well as the full dose.



#10 Billie Murawski

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Posted 05 January 2015 - 11:31 PM

Rcase, I could not agree more! the Less the better! I asked to be reduced because the side affects were seriously kicking my butt! I'm a tough gal, and have a very physical job, and the aches and pains and handfuls of hair were taking its toll on me :angry: I didn't want to switch TKI's either because I was having such a good response to Tasigna. I was on 300mg for 6 months and achieved MMR. He then bumped me up to 450mg to see if I could better tolerate it. But honestly I'm ready to go back to the 300mg. Im going to ask him in march if I can go back down ;) Hoping to be PCRU by then....fingers crossed :D

I agree with Gerry, the lower the dose the better                   Billie







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