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My journey into TKI cessation


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#21 threedprof

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Posted 16 February 2012 - 09:55 PM

i'm pretty sure it does



#22 Dina36

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Posted 16 February 2012 - 10:02 PM

What about smoked salmon, on the package it says its high in omega 3??

I've been eating it a lot and  I always look for the fatty looking one, plus its delicious!



#23 threedprof

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Posted 17 February 2012 - 12:00 AM

I don't think you can go wrong eating any fish The more the merrier, I say.



#24 PhilB

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Posted 17 February 2012 - 03:18 AM

threedprof wrote:

I don't think you can go wrong eating any fish

Oh yes you can! http://en.wikipedia.org/wiki/Fugu



#25 NotJack?

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Posted 17 February 2012 - 11:26 AM

Good luck Joel!


Jack


#26 sschneck

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Posted 19 February 2012 - 05:50 PM

I just posted a link about a study at Penn State, they say they have cured CML in mice...Here it is again...

http://www.pennlive....y_research.html



#27 GerryL

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Posted 20 February 2012 - 06:41 PM

Hi Joel,

Best of luck with this, I will be following your adventure with interest.

I'm hoping to get my second PCRU in April so I can start counting down 2 years of PCRU and do something similar to you. Mind you I've only spoken to my specialist about a dosage reduction, so be interesting to see his reaction if I mention ceasing the TKI to him.



#28 threedprof

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Posted 22 February 2012 - 02:29 PM

Thank you, GerryL! i will take the good luck you're tossing my way and bask in it   If you do mention it to him then be sure to bring some materials/articles with you supporting the topic.  Might help to get him researching it with you.  I'm very happy to see the medical community taking more of an active interest into this subject.  Who knows what these chemicals will do to us in the longterm, if anything.



#29 Fas

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Posted 22 February 2012 - 05:38 PM

Joel,

Very best of luck with your journey.  I too am considering this option.  I am wondering if you had a Gleevec blood level done and if so what was the result? 

Thanks and safe journey,

Fran



#30 threedprof

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Posted 22 February 2012 - 06:48 PM

Fran: I did early on, about a year ago.  It was a little less than ideal where they wanted it to be.  I think it was at 600 whereas they like to see it at 1000.



#31 Pin

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Posted 22 February 2012 - 07:13 PM

Good luck with this - it is very exciting and I hope that it works out for you :)


Diagnosed 9 June 2011, Glivec 400mg June 2011-July 2017, Tasigna 600mg July 2017-present (switched due to intolerable side effects, and desire for future cessation attempt).

Commenced monthly testing when MR4.0 lost during 2012.

 

2017: <0.01, <0.01, 0.005 (200mg Glivec, Adelaide) <0.01, 0.001 (new test sensitivity)

2016: <0.01, <0.01, PCRU, 0.002 (Adelaide)

2015: <0.01, <0.01, <0.01, 0.013

2014: PCRU, <0.01, <0.01, <0.01, <0.01

2013: 0.01, 0.014, 0.016, 0.026, 0.041, <0.01, <0.01 

2012: <0.01, <0.01, 0.013, 0.032, 0.021

2011: 38.00, 12.00, 0.14


#32 Fas

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Posted 22 February 2012 - 07:41 PM

Interesting on the blood level.  Is it the consistent pcru that prompted you to want to do this?  Any there others tests your doctor ran in preparation for you making this change?  Really appreciate you sharing this information.  I do apologize if I am asking questions you have already addressed in other posts.

Fran

Message was edited by: Fran



#33 threedprof

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Posted 22 February 2012 - 08:08 PM

Fran: no problem on answering your questions.  It is directly related to how quickly I achieved PCRU (within eight months), duration of sustained PCRU, and never seeing a positive/weak positive in any of those tests.  These tests have been done in a Lab in Washington state, a lab in Oregon (Genzyme, i wanna say) and now OHSU (still waiting on those results from last week).



#34 Fas

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Posted 22 February 2012 - 08:20 PM

Thanks Joel.  I wish you continued success and please do keep us posted. 



#35 threedprof

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Posted 29 February 2012 - 12:41 AM

Just received word from my Onc saying the lab at OHSU came up with a negative PCR!! This is one of the few times I don't mind being negative for Five very long years   Now I feel even more confident about my quest to stop taking TKI's



#36 Pin

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Posted 29 February 2012 - 12:43 AM

Awesome news! :)


Diagnosed 9 June 2011, Glivec 400mg June 2011-July 2017, Tasigna 600mg July 2017-present (switched due to intolerable side effects, and desire for future cessation attempt).

Commenced monthly testing when MR4.0 lost during 2012.

 

2017: <0.01, <0.01, 0.005 (200mg Glivec, Adelaide) <0.01, 0.001 (new test sensitivity)

2016: <0.01, <0.01, PCRU, 0.002 (Adelaide)

2015: <0.01, <0.01, <0.01, 0.013

2014: PCRU, <0.01, <0.01, <0.01, <0.01

2013: 0.01, 0.014, 0.016, 0.026, 0.041, <0.01, <0.01 

2012: <0.01, <0.01, 0.013, 0.032, 0.021

2011: 38.00, 12.00, 0.14


#37 pamsouth

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Posted 29 February 2012 - 01:36 AM

Unbelievable.  Just give me a quick brief on your profile.

I have been on Gleevec 6 1/2 years but no where close to going solo with out the drugs.  Hope in the future to give my body at least a few months break now and then.

pamSouth


PamSouth


#38 threedprof

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Posted 29 February 2012 - 03:17 AM

Thanks Pin and Pam! Yes it's VERY exciting news

By profile I assume you are referring to my history?  I was diagnosed on Feb. 14, 2006.  My ex wife thought I was just trying to get out of getting her something for Valentine's day   I was sick for several months and developed a dry cough and green tinting to my vision, among other problems.  I was just hired on at Microsoft and a month before insurance kicked in I decided I couldn't live with my issues any longer.  First doc told me it was a middle ear infection and sent me home with a prescription of vertigo pills.  Figuring this was a false diagnosis I went to a new doc who actually took my blood and called me back a few hours later with suspicions.  I was later admitted to the ER and finally into the hospital with a CML specialist.  Several blood tests and BMBs later I was practically PCR negative in October of the same year.  Thereafter, i've divorced, lived a better stress reduced life and been PCR negative ever since.  This last test marked my fifth straight year of negative tests with no hint of going the other way.

After seeing the research being done on cessation and the high success rate of going back to TKI without incident I felt brave enough to try.



#39 Judy2

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Posted 29 February 2012 - 02:35 PM

Congratulations, I'm so happy for you.

Judy



#40 Dina36

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Posted 29 February 2012 - 05:11 PM

Wow what a great and brave person you are, great to share your story with us and brave to actually do this.

I wish you a successful cessation and may we all follow you in the near future!






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