Hello from a newbie (to this forum, not to cancer!)

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annalexandria
annalexandria Member Posts: 2,571 Member
edited October 2011 in Colorectal Cancer #1
Hi folks, just wanted to say hi! I’ve been lurking on this site for awhile, and finally decided it was time to jump in and post something myself. I’m a mom of three, librarian and cancer fighter for the last two years. Cancer being the sneaky wretch that it is, I spent the first six months misdiagnosed with lupus. Luckily (if that’s the right word), my cancer got bored and decided to eat its way through my colon and go exploring. Funny how a little peritonitis can earn you a quick and easy ticket to the ER and surgery, culminating in the grand prize, a correct diagnosis! Unfortunately, my tumor type (carcinosarcoma) is incredibly rare, esp. in the colon-only about twenty documented cases world-wide. My friends say that to them, knowing me as they do, the strangely unique nature of my cancer doesn’t surprise them in the least (emphasis on “strange”). That means there’s no recipe for me in the oncology cookbook, making it hard to figure out what kind of chemo might work. So far I’ve done two rounds (FOLFOX/Avastin and carbo-taxol) with no results, but luckily, surgery continues to be effective. I’ve had four in 18 months, and anticipate more to come. My most recent PET scan showed a new small suspicious spot that will probably have to come out, but we're taking a wait and see approach, in an effort to consolidate my surgeries a bit. On the bright side, my surgeon says I do surgery really well, which is something I always aspired to as a young child, so I’m feeling pretty fulfilled in that regard. I’m now enjoying a lull, recovered from my last surgery and not doing any chemo for the time being. Would love to see a little more fall sunshine here in Seattle, but otherwise things are ok. My best wishes to all the cancer warriors (and their blessed caregivers) out there-Ann

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  • Sundanceh
    Sundanceh Member Posts: 4,392 Member
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    Hiya' Ann
    Unusual and unique cancer, huh?

    This should be a bumpy ride:)

    I'm a big believer in a little 'watch and wait' stuff myself. Sometimes, we get in to big of a hurry to make it all happen. Cancer has no timetable. Sounds like your approach will be more surgical than chemical. Sounds like Folfox has flamed out - Folfiri is the other frontline player in our world here. Avastin too, given with either of those chemos.

    I'm glad all is well for the time being. Welcome aboard and thanks for stepping out of the shadows of being a lurker.

    Take care for now.

    -Craig
  • Brenda Bricco
    Brenda Bricco Member Posts: 579 Member
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    Sundanceh said:

    Hiya' Ann
    Unusual and unique cancer, huh?

    This should be a bumpy ride:)

    I'm a big believer in a little 'watch and wait' stuff myself. Sometimes, we get in to big of a hurry to make it all happen. Cancer has no timetable. Sounds like your approach will be more surgical than chemical. Sounds like Folfox has flamed out - Folfiri is the other frontline player in our world here. Avastin too, given with either of those chemos.

    I'm glad all is well for the time being. Welcome aboard and thanks for stepping out of the shadows of being a lurker.

    Take care for now.

    -Craig

    Hi!
    I love your sense of humor! I bet there are lots of "lurkers", I was one for some time before I started posting. I wish the best for you and any "lurkers". ;)
  • buckeye2
    buckeye2 Member Posts: 428 Member
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    I'm not glad you're here but
    I'm not glad you're here but loved your attitude. Keep posting to keep us all in good spirits. Lisa
  • Annabelle41415
    Annabelle41415 Member Posts: 6,742 Member
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    Welcome
    Glad you joined but sorry you had to. Welcome to the boards. You have an amazing attitude. Wishing you luck in your treatment.

    Kim
  • plh4gail
    plh4gail Member Posts: 1,238 Member
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    Hi Ann...my first thought
    Hi Ann...my first thought was "wow now thats interesting"...I hate to give cancer the credit of being interesting, but unique beast that it can be...well sometimes honesty is what it is. I hope you find some time to rest and heal until your next surgery and in the meantime I hope a treatment plan is found for you beside surgeries. Rest up, hang in there, and stay strong! And we will be here for you always!

    gail
  • abrub
    abrub Member Posts: 2,174 Member
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    Please get to specialists
    Rare cancers require someone with some experience or knowledge. I hope that you have consulted with a major medical center. I go to Memorial Sloan Kettering for my rare cancer (appendix cancer). I know there are some great centers in Washington, too. (I was just in Seattle and Redmond for my son's wedding! Sunny, but windy day.)

    Wishing you well,
    Alice