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One year ago today...


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#1 Taylor

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Posted 31 January 2012 - 10:26 AM

...I went to the ophthamologist to figure out why I kept getting blind spots in my eyes, especially at the increased rate that I had been lately.  I remember how strangely he acted after he looked into my eyes after I had said, "So can we heal them?"  He looked as though I had other things to worry about...although at the time I didn't understand it.  I recall that I also had ANOTHER cold that day...hadn't I just had one a couple of weeks before?  And I was trying to sit up straight in the chair so I wouldn't knock that weird lump under my ribs, whatever that was...

The doctor had me do a blood test, and I went home while I waited on the results.  Like the rest of us, I doubt I'll forget being told (in my case a phone call) that I had leukemia, and I needed to get to the ER so they could begin treatments on me before the big ice storm.  I ended up having to stay for 8 days due to the weather.

I am glad my first year is over.  I reached PCRU in September, just about 7 months after being on Tasigna.  It was a hard year though, mainly the anxiety that is just now really beginning to subside and let things be back to normal.

I am really grateful for everyone here and all the help, information, and support.  I wish I had found this place right after I was diagnosed, it would have made things so much easier.  Anyway, this post is long enough.  Hoping for many more!



#2 CallMeLucky

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Posted 31 January 2012 - 10:43 AM

Congratulations on making it through the first year.  The initiation into this club is quite brutal.  Glad to see you coming out on the other side and doing better.  Here's to many more years.....


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 Judy2

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Posted 31 January 2012 - 10:49 AM

HI Taylor,

I'm so glad that things are going better for you, that you  have reached PCRU. Regarding your blind spots. I started getting blind spots in my eye in Sept 2010, this  continued until May 2011 and it would happen to me numerous times every day. My ophthalmologist called it ocular migraines, I never had a headache with it. The interesting thing is it went away before I was treated or even dx with CML. It went away after I started getting treatment for another condition that I was dx with in Feb. 2011. Did your ophthalmologist tell you this was related to the CML? Also, last Feb I developed swelling in the white part of my eyes. I still have this but it is much improved. My ophthalmologist was never sure if this was from my CML, Angioedema, Wegeners or decreased kidney function. Have you ever had this problem?

Anyway, Congratulations on your success, I wish you continued good  health in the future.

Judy



#4 Taylor

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Posted 31 January 2012 - 10:52 AM

Hi Judy,

I should have made it more clear in my original post, but the blind spots were caused by the capillaries on my retina getting clogged with the WBC and bursting.  Thankfully they stopped as I began to get my counts down, and some of them have healed to wrinkles in my vision, although I still have a few gray spots in my vision here and there that I'll probably have the rest of my life



#5 Judy2

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Posted 31 January 2012 - 10:58 AM

Hi Taylor,

I'm glad your blind spots are better and hopefully your gray spots will fade away over time. Mine started before my WBC was up so I guess mine was due to another condition. I am very glad you are feeling better.

Judy






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