Jump to content


Need some encouragement

  • Please log in to reply
2 replies to this topic

#1 sdl722


    New Member

  • Members
  • Pip
  • 0 posts

Posted 18 August 2011 - 04:43 PM

Hi all, looking for some positive vides from everyone.

On Tuesday I found out that I had achieved Complete Cytogenetic Response when my 3 month BM came back 0/20 (it was 20/20 at diagnosis and FISH at diagnosis was 99.5%).  Woo hoo!  PCR also down from over 100% at diagnosis to 8.54%.  Tasigna is doing it's job.

At the same time, the last few days I have been dealing with the frequent need to urinate, especially after drinking water.  I emailed my nurse and now MD Anderson wants me to come in tomorrow to get another blood test and a urinalysis and to see one of their interns.  I am going to do the blood test fasting so they can get a better look at the glucose.  So far my glucose has been slightly elevated but that was while not fasting.

Ugh, just when I get to the big milestone of CCyR, I have to deal with this.  I'll be keeping my fingers cross tomorrow that it is nothing serious.

Thanks everyone,


#2 janne



  • Members
  • PipPip
  • 16 posts

Posted 18 August 2011 - 05:24 PM


First of all, congratulations on your PCR/FISH results ! Good job! On the urination issue, polyuria, could it be extra caffeine in your diet ? or high doses of B2 or Vitamin C could be associated with this..Let's just think about the simple things that could be causing this and hope for a simple answer. Let us know how your lab/doctor visit turns out. I know it seems like we should only have to concentrate on the major issue at hand and that is the FISH/PCR numbers going in the right direction in a timely manner....it would be great to have everything else just stay on hold for now.That is what I think...like when the dental hygienist cracked my tooth....not something I went in for..... I am sending prayers your way ..hoping for a great outcome....Janne

ADDENDUM: There is also this thread from previous: http://community.lls.org/thread/3169

Message was edited by: Janne

Dx'd: 8/2008. Started Gleevec 400 mg 11/08. 

Drug break 2011.

Started Tasigna 4/11 450 mg.

Reduction to 300 mg Tasigna 1/2012.

PCRU 9/2012.

12/2012 Detectable.

PCRU 4/2013 through 3/2015. (Reduced to 150 mg 7/2014)

12/2015  ? slightly detectable at probably less than 0.01% per Mayo Clinic.

4/2016 PCRU. Still at 150 mg Tasigna.


CESSATION: stopped treatment 7/20/2017. 

9/6/2017:  barely detectable at 0.01%. 

12/11/2017: PCR at 0.09% (did not do the monthly PCR testing.) 

12/18/2017: Inevitable call from Onc. Started back on Tasigna at 150 mg. (Considering Sprycel low dose.) 

#3 sdl722


    New Member

  • Members
  • Pip
  • 0 posts

Posted 18 August 2011 - 06:18 PM

Thanks Janne.  I appreciate your words.  I am definitely trying to think about what little things it is that could be causing.  I'm hoping its just some small infection or just my body readjusting to the heat of Houston.  My wife and I were on vacation up in Maine last week (much, much cooler), so maybe I am just struggling with the hot weather or something like that.  Or maybe I am just over reacting (who doesn't when they have CML).  Hopefully I will know more tomorrow.

1 user(s) are reading this topic

0 members, 1 guests, 0 anonymous users