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failed on lower dose


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#1 tazdad08

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Posted 11 June 2015 - 02:57 PM

Well.....  The title says it all. 2 years of doing great on a low dose, and what phone call did I just get??? BCR/ABL came back at .07. At least I have responded well with Tasigna. My onc was aware of the "trial" I had been doing. Going back to a full dose starting tomorrow. But, I do have to say that the quality of life was better on the lower dose. I will probably reduce again after a long period of time on full dose. I just wanna cuss, scream, and cry!!


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!


#2 TeddyB

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Posted 11 June 2015 - 03:09 PM

Sorry to hear :(

 

What was your results before this one?



#3 tazdad08

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Posted 11 June 2015 - 03:22 PM

I had been undetectable for over 3 years.  sorry, should have included that. I always said that it would happen, but WOW! It's easier to say and talk about before it actually does. For some stupid reason this has hit me harder than the initial diagnosis. I guess because I know the quality of life I am heading for.


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!


#4 mikefromillinois

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Posted 11 June 2015 - 04:06 PM

Could it have been a testing error of some kind?  Three years undetectable then a blip sounds like maybe a testing issue?  Did your doc suggest a retest just in case?



#5 Tedsey

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Posted 11 June 2015 - 06:55 PM

A lower dose may just make you detectable, but it is only failure if you lose CCyR.  You are still well into MMR.  But I feel your anxiety.

 

Tedsey



#6 chriskuo

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Posted 12 June 2015 - 02:14 AM

Which TKI were you taking and what low dose?



#7 tazdad08

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Posted 12 June 2015 - 07:25 AM

I am on Tasigna. I was down to taking 200mg 3 days a week. I took one pill Mon, Wed, and Fri. That worked for about a year, and the year before that I took one pill a day. The first year on Tasigna I took 2 200mg pills per day. So, in a nut shell....I was taking 600mg per week


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!


#8 jjg

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Posted 13 June 2015 - 02:07 AM

Wow that is pretty low.


Dx Dec 2010 @37

2x IVF egg collection

Glivec 600 & 800mg

PCRU March 2012

Unsuccessful pregnancy attempt - relapsed, 3 months interferon (intron A), bad side effects from interferon

Nilotinib 600mg Oct 2012

PCRU April 2013, 2 years MR4.5 mostly PCRU with a few blips

April 2015 stopped again for pregnancy attempt (donor egg), pregnant first transfer, 0.110 at 10wks, 2.1 at 14wks, 4.2 at 16wks, started interferon, slow dose increase to 25MIU per wk, at full dose PCR< 1 for remainder of pregnancy

Healthy baby girl Jan 2016, breastfed one month

Nilotinib 600mg Feb 2016

MMR May 2016

PCRU Feb 2017


#9 rcase13

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Posted 13 June 2015 - 05:34 AM

I have Prorisis and Tasigna just makes it much worse. Of course I have all the regular side affects as well. Going to the beach this weekend. I dread the sun. I use to tan really well but now on Tasigna my face gets red and everyone thinks I am going to drop dead. I would love to have a lower dose. I faithfully take my 600mg everyday. Thankful to still be here.

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!


#10 Dom

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Posted 13 June 2015 - 08:54 AM

Taz, what were the quality of life issues on the normal dose?

Diagnosed in February 2014. Started Imatinib 400 in April.
2014:     3.18     0.91
2015:     0.22     0.16     0.04     0.55
2016:     0.71     0.66

(Started Imatinib 600 in April 2016)
2016:     0.42     0.13     0.45
2017:     0.17     0.06     0.10     0.06     0.34


#11 hannibellemo

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Posted 13 June 2015 - 08:56 AM

taz,

 

I understand the anxiety but I agree with Teds, you are no where near "failed". I would wait for the next test and see what happens then. 

 

Good luck!


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>


#12 Marnie

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Posted 13 June 2015 - 09:35 AM

Your numbers are virtually identical to mine (.0600) and my doc was very happy with my numbers.  As long as you are below 0.1 you should not be concerned.  I'm on 50 mg Sprycel, and have had to watch my numbers SLOWLY come down (and now stay flat) after some time off TKIs to resolve a pleural effusion.  It's frustrating after being at zero, but you need to keep things in perspective.  .07 is nowhere close to failure.  If your quality of life is good on your current dose, and your numbers stay below 0.1, sit back and enjoy life.

 

Marnie



#13 tazdad08

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Posted 13 June 2015 - 05:57 PM

I was fighting the normal fatigue, body aches and chemo brain in full dose. I was a multi-unit restaurant manager and could no longer do my job. I also have a 7 year old son (and a 17 and 21) that I was trying to live a normal life for. My goal was to not let my illness affect his life

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!


#14 Trey

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Posted 13 June 2015 - 06:20 PM

You probably could have been OK on 200mg per day.  But the 200mg every other day for the past year obviously was not enough, although it probably prolonged the PCRU a bit. 



#15 chriskuo

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Posted 14 June 2015 - 02:25 PM

What dose is consideed full dose for you? My understanding is that the standard dosages of Tasigna were 600mg/day or 800mg/day.

#16 tazdad08

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Posted 14 June 2015 - 04:28 PM

My prescription is 400mg per day.

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!


#17 CallMeLucky

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Posted 14 June 2015 - 08:03 PM

It's probably too low but you should repeat test. I went from negative to .04 and back to negative over two tests. The labs are inconsistent.
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%
 

 





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