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I am not defined by my diagnosis

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#1 samycat24


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Posted 29 July 2011 - 03:55 PM

I was diagnosed a little over a month ago after countless inpatient stays over 4 months with Dr's literally scratching their heads wondering what the heck as wrong with me. My white count was consistantly elevated and getting higher and I was lethargic, achy, and just not doing well. Nuclear medicine tests, stress tests, ekgs, ct scans, etc....you name it. It wasn't my heart, wasn't my lungs..they had no idea. I finally got into an Oncologist/hematologist--who is wonderul by the way...and he drew some blood said come back in 3 weeks for an answer. His office called a week later saying he wanted to see me ASAP..now I've been around enough Dr's to know when they say come in 2 weeks sooner than planned ..it means they've found something..so while I was happy there was some news as to what this all was I was not looking forward to the outlook. I got the news..It is CML....So I did the natural reactions..shock, tears, denial, shock, tears...wondering if I was going to have to leave my little 5 year old behind with a Mom..then the Gleevec treatments started and while I havent been 100% yet slowly I'm starting to feel a little bit better. So I tell everyone that you have to have some humor to the situation otherwise you will go crazy......and above all never let anyone tell you ..you can't..there is always a way to find out you can..and most of all I am not my diagnosis..I am not defined by it..it is mearly a part of me..I'm still me..I still sing Karaoke, spend time with my daughter, cook, paint, do art, walk the beach, and swim..I just do a little less of it now. Anyway..that's my diatribe..I'm 34 a spitfire of an Italian/german/Irish Scorpio and I am bound and determined to kick this things butt..... and oh yeah my name Is Stacy Marie it's nice to meet you!

#2 Susan61


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Posted 29 July 2011 - 06:29 PM

Hi Stacy Marie:  Welcome to our group.  We have a lot of new people joining us everyday. ITs a shame they took so long to get to the problem.  Glad you saw a good Oncologist.  Did he just do blood work on you?  You should have had a bone marrow biopsy to confirm your diagnosis.,but   I see a lot of doctors just run tests through blood work now. By doing a BMB, they can check things out in more detail.  You are young, and you will beat this disease.  I was diagnosed in 1998, and I have been on Gleevec since Oct. of 2000.

I am doing very well with no cancer cell detected for 8 years.  These TKI drugs do kick butt to get rid of the CML.

     We would like you to join in and share with everyone.  Every post can help somebody else with the valuable information we all give to one another.

     We have some great people on here that can answer a lot of your questions.  Even after almost 13 years of having CML, I still look for help on different issues I may have.

Susan 61

#3 Marnie


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Posted 29 July 2011 - 07:04 PM

Hi, Stacy Marie. . .welcome to the club that nobody wants to join!  You have the right attitude, and you'll find that life will get back to normal soon, though it may be a new normal.  I still do all of the same things I did before diagnosis:  kayaking, snowboarding, motorcycling, playing my musical instruments, and enjoying life to the fullest.

Glad that you finally got diagnosed, though I am surprised it took so long.  I went in to see my GP for a weird bruise that I couldn't get rid of.  He did a blood test and shuttled me off to a hematologist/oncologist within a day of getting the results back.  They did a BMB and had a diagnosis within a very short time.  I agree with Susan, that you should for sure have a BMB and probably a PCR so that you have a baseline.  Be sure to read Trey's blog, which will give you tons of helpful information, and keep checking in here.  We have a lot of fun. . this is a great group of people. . .helpful and funny all at the same time.

Best of luck,


#4 samycat24


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Posted 29 July 2011 - 07:17 PM

True they should have known sooner..trust me that was an issue..I kept complaning of chest pain and being tired all the time..they thought I had a blood clot in my lung, to a heart problem....finally after 4th time impatient in hospital with increasingly elevated WBC from last time they said for me to see a Rhuemetologist because they thought it might be auto immune...so she ran some tests found nothing and then saw my levels were elevated even more and said "you need to go to an Oncologist/hematologist ASAP" so I tracked on down my insurance would take finally got in ...and walll ahh... But no bone marrow biopsy..kinda glad they didnt have to do that one..just sent my blood off to some uber genius lab. I go back the 4th to get my levels checked with blood work again and I'll be sure to remember certain words and phrases I hear on here on what to ask about and such.. I know I won't be in remission yet but I'm hoping to see a lower level on the WBC.

Also in being proactive..I already signed up for and am working on getting donations for the Light the Night Walk in Orlando in October. I got my packet in the mail and spoke with my liason coodinator about everything..I'm going to go to local business'es this week with the info packs on the paper balloon campaign..so hopefully I can do some good there as well...

But thanks all for the support and welcoming spirit..I'm really glad I joined up..so to speak..actually i was luck enough to not have to pick a club one was chosen for me ..huh

#5 DIona


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Posted 31 July 2011 - 04:47 PM

Hi Stacy,
We share the same story...my doctor kept trying to figure out what was wrong while offering the "You just look too healthy for it to be leukemia" line more than once. But, that's what it was.  No less than a dozen hospitalizations for a preceived kidney infection over about five years. It's been a year now and I, too, hope not to be limited to the diagnosis when described by someone. It's been an adjustment, it's not so bad. My husband has gotten over the initial shock and treating me like my usual self, not a fragile, distressed thing I was to him for a bit.My 21 year old son never waivered or worried....mom will be a-ok, just like always. That's just the attitude I want from him! It's so great reading these stories and finding so many others just like me. God bless and keep us all.

#6 MJL


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Posted 31 July 2011 - 06:08 PM

Hi Stacy Marie,

Welcome to our club. You will find so much help here when you need it. Remember with this group no question is ever a dumb question, there are so many people who have experienced so much and they are always willing to help. Sometimes it gets a little nutty in here, just the group humor, it's great. You have a terrific attitude about your diagnosis, thats admirable.


#7 CallMeLucky


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Posted 01 August 2011 - 07:47 AM

You have a good attitude and that helps a lot.  Not so much in making leukemia cells go away (the Gleevec will do that) but in helping with getting back on with your life.  You're right, this disease does not have to define you, it is serious problem in your life that you have to deal with, but it can be dealt with.  Keeo the positive attitude and touchbase from time to time to let us know how you are doing, we love hearing test results.

All the best

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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