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I have a confession to make........


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#1 HeatherZ

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Posted 14 February 2011 - 04:57 PM

Yeah, I know, there's an app for that.  (sorry - couldn't resist)

I have always been a bad patient but since my dx in March 2010 I vowed to myself and my family I would change that.  I have always said that if there were something horribly worng with me I would not want to know because the treatment is usually worse than the disease.  It took me 7 years to agree to the test for Crohn's because I saw what my Aunt had to endure and swore that all the GI issues were nothing compared to the treatment.  (I tested negative)  So when the CML was diagnosed, I knew my outlook would have to change.  And it did, for a little while.  When I saw my Onc in October he told me to come back in 3 months and gave me the order for the PCR test before the appt.  The problem was their computers were not updated with schedules that far out so they told me to call for an appointment in the beginning of January.  With all the side effects and the horrible cold this winter making it worse, I never called for my appt and I never went for the bloodwork.  I guess my mind relapsed into the old thinking that I didn't want to know if something was going on.

Last week I finally went in and got the bloodwork done and called today for an appt.  I go on Thursday.  Now I am starting to have serious anxiety.  What if something is worse than before and I put myself in jeopardy because I didn't go back last month.  I imagine that if something were horribly off on the CBC the Dr would have called me the next day, right?  Anyway, I am once again committing to staying an active participant in this journey with my health.  Thank you all for being here - somehow making this confession and commitment to my "virtual friends" seems to cement it in my mind that I need to do it.  I will let you know how it goes on Thursday.

Heather

dx 3/10 G400 since



#2 CallMeLucky

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Posted 14 February 2011 - 05:29 PM

I have found that I have gotten into a pattern of feeling pretty good right up until around 1-2 weeks before testing and results, then I start to get anxious and depressed and irritable starting to think about all the what if's.  So the anxiety around testing seems to be normal as I have also heard other talk about it and it just makes sense.  I do think if something were way off, like really low counts, that required immediate attention, that would have shown up in CBC.  While I would not encourage you to miss any more appointments, one upside to the "Chronic" is that it is slow moving, so I don't think anything big happens in 1 month.

Try not to let your mind wander too much with the what if's, I try to keep myself busy around test time.  You'll know soon enough and odds are highly in your favor that everything will be fine.


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%
 

 


#3 Marnie

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Posted 14 February 2011 - 07:33 PM

Yep. . .it's hard to find the right balance betweem being informed, and being terrified.  I have found that I have almost become addicted to blood tests.  I'm going crazy waiting to have my first PCR since switching to Sprycel.  The doc wants to give it some time to work.  That makes sense. . .but dang it, much as I dislike those needles. . .I like to see the numbers!

You'll find your balance, but it may take time.  And don't beat yourself up about waiting.  You need to stay on top of things. . .but the meds will do their job.



#4 Susan61

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Posted 14 February 2011 - 08:59 PM

Just go to your appointment on Thursday, and see what the results were.  I always like a call no matter what my numbers are, and I always get a copy of every single blood test they do.  As for anxiety.  I am living with CML for 12 years, and I still get the jitters everytime I am waiting for my results.

Just do not miss appointments or scheduled blood tests.  If anything was wrong, someone would have contacted you.

Its easy for me to say not to worry, because I do it myself.  You will probably come out of your appointment, and wonder why you got yourself all worked up.

That is usually what happens to me.  Let us know how you do.



#5 HeatherZ

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Posted 17 February 2011 - 04:30 PM

So I saw the Onc today.  I am happy to report that I have achieved a 3 log reduction in PCR numbers.  Unfortunately the quantity and quality of my RBC continues to fall.  I am now pretty anemic so I am going to try the IV iron to see if that can get my HGB up.  From what others have said, I gather the IV iron is pretty good and I am hoping that this weekend I will have some energy.  I go for it tomorrow and again on Monday. 

Heather

Dx 3/2010 G400 ever since



#6 CallMeLucky

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Posted 17 February 2011 - 05:00 PM

Very nice!  Congratulations.  MMR is a huge milestone, looks like the odds were in your favor.

Sorry to hear about the anemia that is creeping up, I hope that resolves soon.


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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