The Leukemia & Lymphoma Society - Fighting Blood Cancers
32 Replies Latest reply: Dec 29, 2011 5:57 PM by Susan61 RSS

Today Is My 13 Year Cancerversary

Susan61 Registered Users
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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

  • Re: Today Is My 13 Year Cancerversary
    mabdou2005 Registered Users
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    Hi susan

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

     

    M abdo

  • Re: Today Is My 13 Year Cancerversary
    cleocans Registered Users
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    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.

  • Re: Today Is My 13 Year Cancerversary
    pammartin Registered Users
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    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

  • Re: Today Is My 13 Year Cancerversary
    Skittles Registered Users
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    You are such an inspiration to those of us on this group and I wish you many blessings Susan.  Kudos to you!  Hugs,Skittles

  • Re: Today Is My 13 Year Cancerversary
    random Registered Users
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    Congrats Susan!!! All the best!

    • Re: Today Is My 13 Year Cancerversary
      Dina Registered Users
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      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.

  • Re: Today Is My 13 Year Cancerversary
    Steve-o Registered Users
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    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.

  • Re: Today Is My 13 Year Cancerversary
    Marnie Registered Users
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    Congratulations!!  Thanks for all that you do here.

     

    Marnie

  • Re: Today Is My 13 Year Cancerversary
    hannibellemo Registered Users
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    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

  • Re: Today Is My 13 Year Cancerversary
    ChrisC Registered Users
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    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

  • Re: Today Is My 13 Year Cancerversary
    billronm@roadrunner.com Registered Users
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    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

  • Re: Today Is My 13 Year Cancerversary
    LoriM58 Registered Users
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    Susan,

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

    God bless,

    Lori

  • Re: Today Is My 13 Year Cancerversary
    Susan61 Registered Users
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    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

    • Re: Today Is My 13 Year Cancerversary
      GerryL Registered Users
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      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.

    • Re: Today Is My 13 Year Cancerversary
      Pin Registered Users
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      Congratulations Susan, and thank you for being there for all of us, especially the newcomers. It really gives us hope to see you doing so well, especially coming from a time where these medications were not available.  :) Pin xxx.

    • Re: Today Is My 13 Year Cancerversary
      pamsouth Registered Users
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      Susan61

       

      Regarding your POST

      " 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."

       

      I couldn’t have said it any better, and my new Oncologist agreed that even if we don’t reach a deep response as long as we stay somewhere in the middle of the chart he drew, that is Ok with him, as long as my counts are not continually going up, which would mean, better do some more labs and see what is going on.  He said he does not necessarily go by the guideline, as my previous oncologist and other Oncologist may. Also he said in the end, it is my choice wether or not to change drugs or go off TKI.  He has patients that do go off their drugs, but he said after about a year they usually go back on them, but that is a whole different thread. He did say he had one patient that could not get the TKI I think it was due to financial reasons, because I told him I would really like to stay on Gleevec since I had been on it 6 years, and didn’t know what to expect on another drug and that Gleevec would be generic according to LLS in 2015.  I told him my other ONC had mentioned a year ago there were newer better and I told her then I wasn’t interested in newer or better as long as Gleevec is keeping me stable. 

       

      I am glad I went to him for a second opinion. as I think it is important to go to a doctor you can talk to without being intimated or you can have a dialog. He is much different then the other doctor.  As  long as my labs stay consistent I am not going to be worried about taking more milligrams or changing drugs.

       

      Thanks Susan, for sharing, it is good to hear from someone who has survived this for 13 years and on Gleevec to, I think?

       

      It reminds me that I am blessed to have been in the Gleevec Generation (2005).  My husbands mother died in 1962 at the age of 41 of Leukemia, he was 21 years.  He has never forgotten her or that terrible last week that she died.  He said he didn’t know which leukemia she had, but she had only been sick for about 3 months, anyhow I would guess she probably had ACL, it was a terrible pitiful death that he watched.

       

      My husband was kind of a shocked, when I was DX with Leukemia, as that was what his mother died of.  Odd co-incidence.  She did not have the luxury of an early dx or newer drug therapies.

       

      The doctor kept telling, Mr Sprugeon remember your mother had the bad kind, your wife has chronic and we have a new drugs out, that your mother didn’t have in 1962.

       

      I will bd 64 this New Year, I have a Twin Sister, too.  We were the first New Year Twins ever born in Grant County Indiana. 

       

      So I am thanking the LORD that I am celebrating another birthday. 

       

      I am actually thankful this incident came up with my old oncologist or what have never went to this board and discovered so many wonderful patients to that I can vent if I need to 24/7.  Most family and friends to understand the disease so there is really no one to talk to when I run into a new hurdle.

       

      Merry Christmas.

  • Re: Today Is My 13 Year Cancerversary
    Happycat Registered Users
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    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

  • Re: Today Is My 13 Year Cancerversary
    threedprof Registered Users
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    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

  • Today Is My 13 Year Cancerversary
    grannyd Registered Users
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    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

  • Re: Today Is My 13 Year Cancerversary
    CallMeLucky Registered Users
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    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.......

  • Re: Today Is My 13 Year Cancerversary
    TroyLynn Registered Users
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    Oh Susan, congratulations!  Thank you for your update, your motivating wisdom, you are indeed inspiring.  Merry holidays : )

  • Re: Today Is My 13 Year Cancerversary
    kreuz Registered Users
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    Hi Susan, congrats on your 13yrs victory! I'm just dx cml last Oct 2011,...26yrs old. I hope i can long term survive with cml and not affect my normal life.

    • Re: Today Is My 13 Year Cancerversary
      Susan61 Registered Users
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      Hi Kreuz:  You are very young, and you will be the one to see what all this new research is accomplishing for Caner in general, not just CML.  Years ago there was not much they knew or could do for CML, but now they know how to stop it from progressing.  More will be learned from that, and we you will see so many new things.  Just try to think positive thoughts.  I know it can be hard sometimes to do that, but it helps your mind and body in so many ways.

      I need to catch up with all these new members coming on here.  It is hard to remember which drug they are using, and how they are doing with it.  You Will Survive.  Just Believe It.

      Susan

  • Re: Today Is My 13 Year Cancerversary
    Fas Registered Users
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    Susan,

    Sorry I am a day late to the party.  Been dealing with some of those challenging difficult times lately.  I just began frequenting this board the last few months and have often read your posts.  You words always offer hope coupled with kindness and compassion.  As a long term survivor too I know the importance of staying the course and getting through those difficult times.   May the hope and kindness you offer others come back to you 10 fold.  Congratulations on lucky 13.

     

    Continued wellness,

    Fran

    • Re: Today Is My 13 Year Cancerversary
      Susan61 Registered Users
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      Thank You So Much.  If you are a long time survivor, and just reading the posts please join in as you probably have so much to share yourself to help others with their concerns and questions.  New members are so confused and scared, not knowing what to expect down the road.  That is why I share my experiences.  I know how I felt at first, and was so glad to find a discussion board to talk to people who truly knew what I was facing each day.

      Wishing You Continued Wellness Also

      Susan

      • Re: Today Is My 13 Year Cancerversary
        jjg Registered Users
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        Thanks Susan, it's reassuring for all of us to hear from a long termer. I'm 12 and a bit years behind you, the lab signed off on my positive FISH a year ago today but we remained not so blissfully ignorant until the 21st.

        Keep on keeping on!

        Josie

  • Re: Today Is My 13 Year Cancerversary
    janner25 Registered Users
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    Hi Susan ~ Congratulations on 13 years!  Such an amazing feat!  I agree with everyone....you are an inspiration and although each of us has had our own journey in the CML battlefield, we all look to you and others to calm our fears, be our cheerleader, and be there for a good laugh!  Keep up the great fight!

     

    Janner

  • Re: Today Is My 13 Year Cancerversary
    Tedsey Registered Users
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    Long life to you, Susan!  I say this with great emotion, admiration and gratefulness for all your support.  I think I can speak for all of us saying you are one of the most valued members on this board.  Thank you for leading us to have hope, hang on, and hold our heads up high. 

     

    A very heartfelt congratulations! 

     

    Teds

  • Re: Today Is My 13 Year Cancerversary
    Jamar Registered Users
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    Congrats Susan,

     

    You are truly an inspiration to all of us. Especially to anyone coming to this forum for the first time.

     

    J

  • Re: Today Is My 13 Year Cancerversary
    nathaliece Registered Users
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    Susan,

     

    I have been away for a while and just saw your post.  Congratulations!  I will never forget posting my first message seeking answers and assurance.  You were the first to respond.  I remember feeling hopeful for the first time after my diagnosis when I heard your story of success.  You have been such an inspiration for me.  When I have shared the news of my diagnosis with friends and family and I see the grief in their facial expression, I almost always tell them about you and how you have successfully fought CML for 12+ years and continue to do so.  So, not only have you helped many of us on this board but our friends and families as well.  Your grace, kindness and thoughtfulness is so appreciated.

     

    Happy New Year!

    Nat

    • Re: Today Is My 13 Year Cancerversary
      Susan61 Registered Users
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      Hi Nat:  Happy New Year to You Too.  I pray for some great new breakthroughs in this New Year Ahead for many things, but especially for CML.  They are so close to better ways to treat CML. 

           You made me feel so good sharing your feelings about any inspiration that I may have given you to fight this terrible disease.  Its not always easy to keep a postive attitude, but as each day or year goes by and you look to where you are now and not where you were it amazes you. 

          You do not get over the nervous feeling everytime you go for that blood work waiting for those results.

          I have to go get my PCR testing in a few weeks, and I will post them.  I do that to help a lot of the new people to see what can be accomplished.  I also like to remind people that when I started this journey, I only had Gleevec. Now there are other choices if the Gleevec does not work.  There is one in clinical trial now that is very promising.

         I hope you are doing very well in your progress.  Glad you posted.

      Susan

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