The Leukemia & Lymphoma Society - Fighting Blood Cancers
30 Replies Latest reply: Jun 22, 2011 12:01 PM by CallMeLucky RSS

Newly Diagnosed

Steve-o Registered Users
Currently Being Moderated

Hi CMLers:

 

First I want to thank all of you for allowing me to pour through this discussion sight over the last couple of weeks to learn more about CML as a guest.  The information has given me hope and allowed me to stay positive in spite of the diagnosis.  Trey - dude - you're like a CML encyclopedia.  Thank you for all your links and great insight.

 

My journey began on May 20 with a visit to my doctor for what turned out to be an enlarged spleen.  CT scan then blood work, then more blood work.  WBC count is around 265000.  No blasts.  Start Gleevec as soon as it shows up at my doorstep [Wednesday we hope].  Dr. Brian Druker is my new frickin hero.

 

I'm 47 years old. I'm married with four children.  Been in the grocery business for 32 years - same company.

 

Not sure how active I'll be on the forum, but definitely appreciate the resource and wealth of experience [CMLers with lots of experience is a beautiful thing!].

 

Thanks again,

Steve-o

  • Re: Newly Diagnosed
    CallMeLucky Registered Users
    Currently Being Moderated

    Hello Steve - I'm sorry you had to join us here, but glad you found us and are getting something from the site.  I think we have all benefited greatly from it, especially at the beginning when we are most scared about the diagnosis.  It is good to talk with people who have been at it for a while.  You get the sense that there is the very real probability that you too will be able to live with this disease for a long time.

     

    I wish you wellness and peace of mind and I hope to see you are the board from time to time to let everyone know how you are doing.

     

    Best of luck..

  • Re: Newly Diagnosed
    billronm@roadrunner.com Registered Users
    Currently Being Moderated

    Dear Steve-o,

    Welcome to our group. If you follow the discussion board you'll hear about the side effects (of course a lot of people have none) I don't think there isn't anything we haven't covered for a long time. No modesty here we're all in the same boat. So feel free to ask about anything. Then we tell each other how we deal with the problem. Sometimes we get a little crazy and we get to joking around. No

    doom and gloom here we all have our ups and downs and there is always someone on the board to talk to you.If you do have any trouble with your Gleevac, keep a lot of immodium on hand. Don't get discouraged you will be fine.Adjusting to our new meds always takes awhile. I was on Gleevac for almost 4 years.My biggest problem was gi problems. In other words as we call it the Sharts! There isn't a person on this board that hasn't had to deal with them.

      Keep us posted I see you were just dx today. You must be ready to burst. Acceptance is the first hurdle. We have people on this board that have had cml for 15 years. And everyday the researchers get closer and closer to a cure, or a med with less side effects. Fatigue is a big problem it seems to affect women more than men. So try not to panic so much, remember we have all been where you are right now.           Best wishes Billie

  • Re: Newly Diagnosed
    Trey Registered Users
    Currently Being Moderated

    Glad you found the information helpful.  I assume you saw this link:

     

    http://community.lls.org/thread/2600

     

    http://community.lls.org/people/Trey?view=documents

    • Re: Newly Diagnosed
      Steve-o Registered Users
      Currently Being Moderated

      Thanks all,

      And thanks again for the links Trey.  My oncologist was impressed when I showed up for my appointment with the NCCN treatment playbook as a PDF on my phone.

       

      Just got word from pharmacy that's sending me the Gleevec - insurance was approved - like I needed that stress too.  Will arrive FEDEX tomorrow so that I can start kicking this cancer's ass.

       

      Maybe this has been said before, but maybe our CML theme song can be "Philadelphia Freedom."  Freedom from the ph+ chromosome?  OK, maybe it's a stretch.

       

      Have a good day.

       

      Steve-o

      • Re: Newly Diagnosed
        hannibellemo Registered Users
        Currently Being Moderated

        You better hope Steve-o that I can get "Philadelphia Freedom" out of my brain before I go to bed tonight! 

         

        Actually, I think it's a good idea, how many of you are singing it to yourself, right now? If you aren't you will be...I just planted the seed. I can be very evil!

         

        Pat

      • Re: Newly Diagnosed
        sdl722 Registered Users
        Currently Being Moderated

        That's funny.  When I was first diagnosed in April, and understood what CML was all about, that song was constantly going through my head!  Haven't thought about it since the beginning...now I'll have to try to get it out of my head.

         

        Completely unrelated, but I was also born in Philadelphia, although I don't remember anything since I moved away when I was less than a year.

        • Re: Newly Diagnosed
          Steve-o Registered Users
          Currently Being Moderated

          "Oh Philadelphia freedom shine on me, I love you

          Shine a light through the eyes of the ones left behind

          Shine a light shine a light

          Shine a light wont you shine a light

          Philadelphia freedom I love you, yes I do."

           

          Just in case you needed a memory jog. 1975 was a while back.....

          • Re: Newly Diagnosed
            billronm@roadrunner.com Registered Users
            Currently Being Moderated

            Dear Steve- o

            Ditto on what Pat said. just remember payback-hee-hee.My Grandson learned eensywensy spider. Iwalked around singing it for a month. eensywensy is not in the dictionary.

                                                                                         Billie

          • Re: Newly Diagnosed
            knoppl Registered Users
            Currently Being Moderated

            This is the one time I hope my brain fog kicks in! 

          • Re: Newly Diagnosed
            billronm@roadrunner.com Registered Users
            Currently Being Moderated

            Dear Stev-o,  If I ever get to Philly you're next on my list!

            I don't know whos worse you or Pat, I'm having trouble sleeping lately so I surf the board and there it is Philadelphia Freedom Monday June 13, 2:16 AM est. 2011

            Pat you are evil I will get you back.  !,000 years ago I sang. I am going to go through my music books and find the perfect haunt song. I still can't spell eensy weensy spider went up the water spout down come the rain and washed the spider out. Out come the sun and dried up all the rain and the eentsey weentsy spider went up the spout again.                            Every Morning think of this      Remember the song Devil or Angel I can't get you off my mind dee-dee-dee-

                                                                              Sweet innocent me hee-hee

            • Re: Newly Diagnosed
              PhilB Registered Users
              Currently Being Moderated

              Billie, if you get bored with that you could always try the winter version that my kids like:  Incy Wincy Spider climbed up the Christmas Tree / Down came the snow and made poor Incy freeze / Out came the sunshine and melted all the snow/ So Incy Wincy Spider had another go.

              Fortunatley I have no idea how the tune for 'Philadelphia Freedom' goes and based on everyone else's responses I' definitely not going to look it up!

              Phil

              • Re: Newly Diagnosed
                billronm@roadrunner.com Registered Users
                Currently Being Moderated

                Thanks Phil,

                Im going to write those words down, my grandsons will get a kick out of it around the holidays. Notice I said write those words down, oh I remember when I could have memorized them in a minute. Philadelphia Freedom is a catchy tune look it up you'll like it. Thanks to Steve-o that song is going to haunt us all forever you might as well listen to the tune.

                                                               Take Care Billie

          • Re: Newly Diagnosed
            billronm@roadrunner.com Registered Users
            Currently Being Moderated

            Dear Dear Stevo-o,

            For over 2 days I couldn't get that song out of my mind. I was even singing it to my dog. Tonight I was talking to one of my dearest friends and telling her about this site then I went to tell her about your song you haunted us with, I couldn't remember the name of the song or the lyrics or the tune.My mind went completely blank. Now I have to go through all my music books and play the song it's driving me crazy. That's okay I have a way of really confusing people, it just comes naturally, but you're next I just start coping with my brain fog and now this,

            Pat and Susan61 and caroline, Marnie, and all of our new BFF's  I can't remember all your names, If I could I wouldn't be on this site. Don't you think it's time to harrass Steve-o? Anyone that messes with our brain fog  should be dealt with appropiately.                                  LOL Billie

            • Re: Newly Diagnosed
              Steve-o Registered Users
              Currently Being Moderated

              Now Billie, be nice.  Like I tell my wife, I still have an enlarged spleen, so you can't make me laugh so hard.  But if you truly want to harrass me, I'm ready.  Eight days of Gleevec attacking cancer cells, so I'm up for the challenge.   Besides that, this Philadelphia Freedom took me knee high to a man!

               

              Steve-o

  • Re: Newly Diagnosed
    jsmiddiebrush Registered Users
    Currently Being Moderated

    Hi Steve-o!  Sorry you have to be here....but welcome aboard.  It seems like you have a good attitude already!

     

    I remember waiting for the first shipment of Gleevec to arrive.  With our insurance the co-pay would have been HUGE, so had to go through a big ordeal to get financial assistance from Patient Services Inc, then we had to get "authorization" from the insurance company, and "approval" to go through the speciality pharmacy, the PSI had to contact the pharmacy, then angels had to dance on the heads of pins....etc.

     

    Anyway, I remember the day it arrived.  I was expecting....I don't know.  Something really special, like the fire engine would race up the street, sirens blaring, and Navy SEALS would run up to the door.  They'd hand deliver a Waterford vase full of Gleevec; each pill individually wrapped in white satin.

     

    But no.  One day there was a Tyvec envelope in the door with a regulalr old  plastic prescription bottle with 30 pills.  Kind of a let down....

     

    But good results overall!

     

    Let us know how your treatment proceeds, we're here to help!

     

    Joanne

    • Re: Newly Diagnosed
      hannibellemo Registered Users
      Currently Being Moderated

      Joanne,

       

      You do know how to paint a picture with words! Thanks for the belly laugh!

       

      Pat

       

      P.S. I have got to quit re-opening this post - that darn song gets me every time! Phil - a - delphia Free-dom!

    • Re: Newly Diagnosed
      Steve-o Registered Users
      Currently Being Moderated

      Joanne,

       

      Absolutely had the same sense of excitement and mystery surrounding the Gleevec delivery.  I signed for it from a cute FedEx girl - my wife was hoping for another driver she knows from work, but oh well.

       

      Took the package to my onc nurse to verify the contents, discuss side effects, concerns, etc.

       

      Popped the first one last night with dinner.  Had a little anxiety the rest of the evening - wait - is my heart still beating?, what's that rumbling in my stomach?, is that a cramp coming on?.....

       

      Woke up with a mild hangover (although I joke I'm now 3 weeks sober), but nothing some water and a little breakfast didn't cure.

       

      Day 1 in the books.

       

      Thanks again, Joanne, for your description - hilarious.

       

      Steve

  • Re: Newly Diagnosed
    cousineg Registered Users
    Currently Being Moderated

    Hi Steve,

    I suppose that you love painting. Take a break of reading medical topics and

    go to that link: CMLer’s portofolio

    But If you like more music, then go to:

    The march toward healing

    Too much angels in heaven!

    The battle for healing

    Welcome to our group

    Gilles

    • Re: Newly Diagnosed
      Steve-o Registered Users
      Currently Being Moderated

      Gilles,

      Very cool links.   Now I just have to learn French.  I have found music therapy to be relaxing.  Helps with all the anxiety associated with the dx.  Lately, tune to Pandora for Cat Stevens, James Taylor, Neil Young - more mellow stuff.

       

      The paintings were nice as well.

       

      Again, thanks.

       

      Steve

  • Re: Newly Diagnosed
    Susan61 Registered Users
    Currently Being Moderated

    Hi Steve-o:  I just saw your post.  I must have missed it somehow, but glad you finally joined us after reading all the posts on here.  Yes, Trey is amazing.  We all turn to him for answers.  He studies everything on CML so he can help himself as well as others to learn what its all about.

    You can see everyone has a different story, and a different form of treatment.  Gleevec was the first TKI to get things started.  I was diagnosed in 1998, but Gleevec was not here until 2000.  I did the clinical trial for Gleevec in New York back then.  Its over 12 years now, and I am still on my Gleevec 400mg a day.

    I had a lot of side effects in the beginning, but nothing I could not handle.  My biggest thing was that I like to take all my medications in the morning, then I am done for the day.  I have to eat a good breakfast before taking my Gleevec to avoid Nausea.  Some people prefer to take theirs after their dinner at night when they are eating a bigger meal.  You will work out your own schedule as to how you feel.  Other than that I have had fatigue, but it got better after I was on the Gleevec for awhile.  I also had to start taking medication for the heartburn that Gleevec can cause for some people.

         Just post anything you want to us after you start taking your Gleevec.  Someone is always available to help you out to solve anything your feeling.

        We have a great bunch of people on here.  I did not read all the other messages, and I might be repeating some things.  Just wanted to let you know how I have handled everything.

        I think one of the biggest things I could share is to not get discouraged, even if you get a lot of side effects.  I always stop to think about the fact that I can cope with it because its doing its job to get rid of the cancer cells. 

       I AM SO GLAD TO BE WHERE I AM NOW AND NOT WHERE I USED TO BE!!!

       My husband is my great supporter and he keeps me positive all the time.  He is also in the grocery business since he was 16 years old.

    Take Care

    Susan

  • Re: Newly Diagnosed
    sschneck Registered Users
    Currently Being Moderated

    I was just diagnosed myself on June 9th.  Dr. wants to put me on Sprycel.  Why did yours put you on Gleevec?  Just curious.  I am going for a second opinion July 8th because the current Doc is not thrilling me...I love your Philidelphia Freedom theme song idea!

     

    Here is Elton singing it live on Youtube.

    http://youtu.be/IhyMvQ_N7Zc

    • Re: Newly Diagnosed
      Steve-o Registered Users
      Currently Being Moderated

      Sschneck:

       

      My onc doc has 8 other CML patients currently on Gleevec.  When we discussed it, she indicated she likes to start with it because it has a longer track record in treating CML.  Not sure of any other factors. While my spleen was enlarged and WBC count high, I didn't have any other symptoms and am in pretty good health.  In fact, my company has health incentive money and I qualified for all of it - about a thousand bucks. Burned through that in the last few weeks....

       

      I would definitely ask your doc about why he/she chose that drug.  But on the other hand wouldn't worry because they all appear to work for what we have.  Sounds like everyone has a unique experience with each drug and side effects, responses, etc.

       

      I've only had mild stuff so far, but nothing too different than what I feel after 30 years selling groceries.

       

      Good luck with the second opinion.  I think that's a great idea in light of your initial feelings with the first doc.

       

      Steve-o

    • Re: Newly Diagnosed
      Susan61 Registered Users
      Currently Being Moderated

      Hi:  Alway good to get a second opinion, and if something does not feel right or you feel no connection then its time to move on to someone you know will spendthe time to satisfy all your questions and needs.  Gleevec was the first TKI developed, and then the Sprycel, Tasigna came later.  I think I mentioned that the Gleevec was my only choice back in 2000.  It has worked for me, and I am still on it.  A lot of people said they could not handle the side effects of the Gleevec, and switched to one of the other TKI's.  I have a lot of side effects, but so many of them have gotten better as the years went by.

          I would definitely see a doctor who has a lot of experience with treating CML for many years, and is up to date on all the TKI's.

         When my doctor retired, the practice just moved me onto a new doctor who took over.  I was not impressed, and he did not listen to me.  He was just out of medical school a few years, and thought he knew it all.  I switched to another doctor.  I have only seen her a few times, and if anything does not seem right then I will switch again.  She does seem to know a lot, and she agreed with the treatment that my first Oncologist had with me.

        You have to make the choices that feel right to you.  Good Luck

  • Re: Newly Diagnosed
    Happycat Registered Users
    Currently Being Moderated

    Hey, Steve-o,

     

    Sorry to see you here, but nice to have you... except for that Philadelphia Freedom thing that's going to run through my head for days now!

     

    Traci

  • Re: Newly Diagnosed
    Steve-o Registered Users
    Currently Being Moderated

    Today's blood work showed WBC of 155,000 (down from 274,000 last week).  And I can't feel me spleen no more.  14 days of Gleevec and Elton doing their thing.

     

    The whipporwill of freedom zapped me

    Right between the eyes.

     

    Steve-o

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