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Feeling so much better!


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#1 lala

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Posted 02 October 2011 - 11:12 AM

Good morning!  For those who still feel bad after taking gleevec 400, I want to offer some hope!  Changing to 4 smaller pills each day has changed my life!  I teach in the mornings, and this is the first year that I have been able to STAND and teach!  I have spent five years sitting down......what a thrill to be able to stay on my feet all morning!!!!!  I no longer almost cry when I walk to and from my car!!!!!  I rest on Saturdays and go to Target on Sundays......woohoo!  If you still are suffering on the 400, please consider this easy change!  I have a big part of my old life back and am so grateful.  Thanks, TREY, for suggesting it!  I finally feel like I can take a walk around the block!!!!!!! Lala



#2 hannibellemo

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Posted 02 October 2011 - 06:17 PM

Lala,

That is fantastic that such a small change can make such a big difference for you! I'm going to make sure that I mention this to my onc on my next check up so he can put it in his arsenal if it isn't already there.

Pat


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>


#3 CallMeLucky

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Posted 03 October 2011 - 01:24 PM

How has your PCR status been?  Would like to hear from others that have done this.  I mentioned it to my doctor and she wasn't crazy about the idea using the typical "there hasn't been a trial with that dosing schedule so I am not comfortable prescribing it that way".

Are you taking four throughout the day or 2 in the morning and 2 at night?

Glad it is helping you.


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%
 

 


#4 lala

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Posted 03 October 2011 - 02:15 PM

Hi!  Yes, I take 2 after lunch and 2 after dinner.  That old pill used to make my stomach burn all night long.....and then the fatigue that followed......it was really bad.  NOW, I HAVE NO MORE BATHROOM ISSUES!!!!!!   YAHOO!  I had the big D for five long years----no more!!!!!!!  my excellent blood tests are the same!!!!!!  My doc at a large cancer/teaching hospital, Loyola, did not hesitate!  I still need to rest every single day and am not my old self, BUT I am sssooo much better!!!!!  Remember, I always talked about the deep fatigue......I was unable to live normally, for five long years!, but am feeling better now!!!!!  Can you see me dancing?!  It is good to feel better!  ;). I hope this helps someone on our board........can you imagine life without the BIG D.?????  It is so much better!  Hope your day is as bright as ours in sunny Chicago.......it is beautiful!!!!!  Going out to enjoy the day with my doggies, Lala






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