UPCOMING PETSCAN

FRANTIC
FRANTIC Member Posts: 106
edited March 2014 in Colorectal Cancer #1
Hello to all and Merry Christmas. Even though I do not post often I still read the messages. Brief update. Dx.ca/colon Aug.2003.8/20 nodes positive. Stage 4 locally advanced ca. Still have
a illeostomy bag on right side and a draining mucous fistula on the left side(part of the disconnected colon). Since June of 2004 after my last treatment of chemo, 2 weeks on and 1 week off of Cpt11,lecovorin and a shot of 5 FU also 5 1/2 weeks of radiation. I still am receiving blood transfusions. I have been thru 4 bone marrow biopsies and 2 well known physicians in Manhattan in New York city. One was from Sloan Kettering and one currently I am seeing from Mount Sinai Medical Center. My tests are coming back normal. The bone marrow is making red cells. There is no evididence of autoimmune deficiency. There is no evidence of the body attacking the red cells. No chromsome damage. Yet I am still getting transfusions for just red cells. It started as every 8 weeks and now down to every 5 weeks. I have been thru every blood test there is and yet no answer. There is a posibility it is the start of MDS (myloid dysplasia syndrome) possibly from the radiation to the pelvis but inconclusive at this time. My CEA last week came back as 0.4. My CA19.9 was 39. I am do to have a petscan on January 9th, 2006. I have not had a petsscan since Feb.2005. The anxiety waiting for the results is worse than having the test itself. The bone marrow is another issue. Although the physician in the city did give some goos news that the bone marrow biopsy did not show any cancer. I told him he only biopsied one area.(not too positive thinking on my part). I asked him if colon cancer can go to the bone and he said cancer can go anywhere. He did say there could be a mass somewhere signaling the bone marrow and suggested that it has been almost a year since the last petscan. So I scheduled one. And at the same time I booked a cruise in March. Good news or bad I am going on this cruise. I need to get away from all these inconclusive diagnosis. I will keep you updated. Merry Christmas to all and a Happy New Year.

Comments

  • BusterBrown
    BusterBrown Member Posts: 221 Member
    #2
    Frantic,
    Merry Christmas...Sounds as though you've been through quite a bit, hang in there and keep up the good work. I admire your strength, courage, and determination...
    Buster
  • ron50
    ron50 Member Posts: 1,723 Member
    #3
    Fran,
    you are like a rock on a wild storm wracked beach ,no matter what gets hurled at you,you survive. I know that it isn't easy and I know that sometimes it would be just so easy to give up, but you never do Fran , I am sooooo very proud of you. I wish you calm seas and light winds from now on you have earned a break ,best wishes to you and your family Ron.
  • spongebob
    spongebob Member Posts: 2,565 Member
    #4
    Frantic -

    Good for you for booking that cruise! Have a great time and LIVE YOUR LIFE!

    Merry Christmas and a happy & healthy new year.

    - SpongeBob
  • goldfinch
    goldfinch Member Posts: 735
    #5
    Boy, I hate that waiting period. Here's hoping for good results! I don't understand what's going on re your need for blood transfusions, but sure hope that improves with time. Keep us updated. Sending healing thoughts your way.
    Mary
  • Glv49
    Glv49 Member Posts: 206 Member
    #6
    Hi Fran,
    I sent you an email and haven't heard from you for quite a while. I am glad you are doing good. Don't worry about your pet scan, I am sure it will be just fine. It is always such a worry whenever we have tests, especially waiting for the results!! I am glad to hear that you are going on a cruise you deserve it! I hope you have a great time. I hope everyone had a great Christmas and a Happy and Healthy New Year!
    Your friend in PA
    Gail
  • CAMaura
    CAMaura Member Posts: 719 Member
    #7
    Hey Fran(tic)!!
    So happy to have read a post form someone so positive as you. Good on ya for booking the cruise; I can just feel you looking forward to breathing in sea air.
    Now, It wouldn't really be me if I didn't ask you to knock on the nutrition door...so I will. I bug just about everyone to look at how we, as individuals, can strengthen ourselves in every way to fight; I hope you are looking at every source of strength and vitality....including what we put in our mouths (not to mention who we hang around with and listen to).
    Take care and all the best to you in 2006....and far beyond -- Maura

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