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Today Is My 13 Year Cancerversary


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#1 Susan61

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Posted 12 December 2011 - 12:49 PM

Just to let all our new members know that you can beat this disease.  Have Faith and Determination to fight each day to get through no matter what side effects your having.

I cannot believe today is 13 years since I was told I had CML.  You never forget that day, or exactly how they told you that you had CML.

I am so glad I have had such great support and caring friends to get me through each obstacle along the way.  There might be new things that pop up, but you get through it.

I plan on having a great Christmas Celebration with my family, even with this horrible economy as so many of us have been having hard times dealing with including me.

God Bless All Of You

Susan



#2 mabdou2005

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Posted 12 December 2011 - 01:11 PM

Hi susan

You are our inspirin here congratulation to you and hope all the good health forever to you  and merry christmas

M abdo



#3 cleocans

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Posted 12 December 2011 - 02:13 PM

Susan, congratulations on 13 years and here's to many more. Thank you for all your info, support and caring to everyone on this board!   On this day 13 years ago I was getting married.



#4 pammartin

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Posted 12 December 2011 - 03:00 PM

What an inspiration you are to everyone, but especially the new people like me just beginning our journey with CML!  Happy holidays to you and your family!

Pam



#5 Skittles

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Posted 12 December 2011 - 03:07 PM

You are such an inspiration to those of us on this group and I wish you many blessings Susan.  Kudos to you!  Hugs,Skittles



#6 random

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Posted 12 December 2011 - 05:05 PM

Congrats Susan!!! All the best!



#7 Dina

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Posted 12 December 2011 - 05:27 PM

Congratulations Susan, wish you many many more.......

Thank you for coming here and talking to us, it means a lot to us,especially to newly  diognosed like myself.

Wish You All the Best Forever.



#8 Steve-o

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Posted 12 December 2011 - 05:58 PM

Others have said it already, but thank you for being such an inspiration and sharing your story with all of us. Knowing that most people have fared so well since Gleevec was introduced is definitely something that helped me get through those tough first couple of months after diagnosis.

Congrats and here's to many more birthdays, anniversarys, holidays and, of course, cancerversarys.



#9 Marnie

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Posted 12 December 2011 - 06:20 PM

Congratulations!!  Thanks for all that you do here.

Marnie



#10 hannibellemo

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Posted 12 December 2011 - 07:39 PM

Susan,

I'm so thankful you are alive 13 years later to share your story and experiences with all of us! Here's to many, many, more cancerversaries! (Today is my 3rd cancerversary)

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>


#11 ChrisC

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Posted 12 December 2011 - 07:48 PM

Way to go, Susan! Well done — you make the CML journey appear so do-able, with grace and courage. Wishing you the best of the season, and a most magnificent new year, full of many successes, lots of joy, and of course, perfect PCRs!

ChrisC


Be alert, but not overly concerned.

 

• Dx Oct. 22, 2008, WBC 459k, in ICU for 2 days + in hospital 1 week

• Leukapheresis for 1 week, to reduce WBC (wasn't given Hydroxyurea)

• Oct. 28, 2008: CML confirmed, start Gleevec 400mg

• Oct. 31, 2008: sent home when WBC reached 121k

• On/off, reduced dose Gleevec for 7 months

• April 2009: Started Sprycel 100mg

• Sept. 2009: PCRU 0.000

• Sept. 2011: after 2 years steady PCRU & taking Sprycel 100mg before bed, quit Sprycel (with permission)

• Currently: still steady PCRU, testing every 6 months 🤗

— Fatigue, hearing loss continue, alas, but I prefer to think it is all getting better!

 

 


#12 Guest_billronm_*

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Posted 12 December 2011 - 09:19 PM

Dear Susan,

  Congratulations, I'll always remember that you were one of the first to greet me when I joined this site last year. After feeling I was all alone in this mess You and so many others came forward and welcomed me. I cried for 2 days. (happy tears). I just can't thank everyone else on this site for all your love and support.

Dear Pat,

Congratulations on year number 3. I remember you to were one of the first ones to welcome me. But for the life of me I couldn't figure out what kind of parent would name their child Hannibello!

Congratulations to you both  Love Billie



#13 LoriM58

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Posted 12 December 2011 - 10:15 PM

Susan,

Congrats on your journey!!   May you have many more cancerversaries to celebrate!!

God bless,

Lori



#14 Susan61

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Posted 13 December 2011 - 12:09 AM

Congratulations Pat on your 3rd Anniversary.  Before you know it you will have a 1 in front of your 3 , and many  more after that.



#15 Susan61

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Posted 13 December 2011 - 12:26 AM

I just want to Thank Everyone for all their well wishes, and I always post my new year fighting CML.  This is what helped me when I started, and I saw people who are still here who did not even get to PCRU. There are a lot who have maintained a CCyr for years without getting to PCRU.

That is why I tell everybody not to try to push to get somewhere too quick.  We are all different in how these TKI drugs work for us.  I truly believe that most of the younger people who are just being diagnosed will see the cure, even if I do not get to experience that day.

So much has been learned about CML, since they figured out Target Therapy.  It is being used now for so many other cancers to block those cancer cells and make them die off before they can go any further.  Nobody is promised a tomorrow, and I still get nervous everytime I am due for that PCR Test.  I have to go in a few weeks to get my 6 month test along with my regular blood work, and I will share those results.

I do have a lot of Faith which I only developed after I saw what I could achieve.  If you know my story of when I first was diagnosed in 1998, and I had nothing going for me except the development of Gleevec at that time. 

We all need support no matter at what stage we are at with our disease, and thats why we all come here to talk and share.  Somebody always has something to tell to help in some way. You can get on here at any time of the day or night, and you will get a response within hours.  I also am so glad we have some very knowledgeable people on here who spend a lot of time studying all the latest things like Trey, who has given me better advice than some doctors I have seen through the years.

I also Wish Everyone a Very Merry Christmas or whatever Holiday you celebrate.

I feel good also that what I have said has inspired so many.

Thank You

Susan



#16 GerryL

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Posted 13 December 2011 - 03:23 AM

Hi Susan,

Happy 13 year cancerversary, may you have many more - you've been an inspiration to most of us particularly when we are first diagnosed.

Wishing you a Merry Christmas and a safe and happy New Year.



#17 Happycat

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Posted 13 December 2011 - 05:12 AM

Congrats to you, Susan. How wonderful it must be for you, especially when the cml prognosis was not that great when you started this journey. Things have changed so much since then.  Thanks for providing the hope and inspiration.

Traci



#18 threedprof

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Posted 13 December 2011 - 07:42 AM

That is simply inspiring, Susan! congratulations!! I echo what everyone else has said and then some.  May you continue to see a long fruitful life AND the cure



#19 grannyd

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Posted 13 December 2011 - 08:18 AM

Congratulations Susan for your 13 year victory over CML!!!! You have been blessed & have shared your blessings with all of us, for that I say THANK YOU!!!! I remember you was one of the first people to respond to my first post as I was terrified of learning I had CML, almost one year ago. You & so many others opened my eyes that I would be able to live with this & helped me so many trying days of coping. Thank you for sharing your journey with all of us, you have made such an impact on my journey. May you have many more years of celebrating your cancerversary!!! Have a very Blessed Merry Christmas & a happy, healthy New year!!

Pat, congratulations on your 3 years!!! Don't know where I would be without all of my CML family. I feel I have been Blessed with knowing so many wonderful friends on this CML site!!!

Prayers to all, granny d



#20 CallMeLucky

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Posted 13 December 2011 - 01:40 PM

Thank you Susan for being a part of this community.  Your presence serves as such a reassurance to many with CML and your posts have calmed many nerves.  You are greatly appreciated by me and I am sure by everyone else.  Congratulations on being a survivor and a role model for all of us.  Merry Christmas and I hope you have a very good New Year.......


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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