Tumor Board FINALLY, Standford next

herdizziness
herdizziness Member Posts: 3,624 Member
edited March 2014 in Colorectal Cancer #1
So this is how it was explained to me. Hmmmm, hard to explain.
At the tumor board meeting, everyone agrees I should have surgery, it's the explaining the surgery apparently to insurance, etc., that could be problem.
As they all agree that someone with "the many masses" as the onc put it, that I HAD, cannot have them disappear like mine. They do not know how this is possible, so there is consensus that perhaps they are still there, just to small to see now, which means by medical standards I'm still beyond help and should not have surgery offered. But they aren't sure. Plus the CEA count is down to 8 from 2184. So I'm the puzzle to them.
However, was told none in this area could do the surgery, they all agreed on that.
Sooo, I'm being referred to Stanford to get their opinion and possible surgery. But onc, thinks if called palliative, I could still get the surgery.
Still no chemo, platelets are still low although up from 94 to 96.
Soo, good news maybe.

Comments

  • pepebcn
    pepebcn Member Posts: 6,331 Member
    #2
    good news
    for sure they will bee good news very soon.
    Take care!
  • Lovekitties
    Lovekitties Member Posts: 3,364 Member
    #3
    What a puzzle
    First of all, great news about the CEA. That is a dramatic drop for sure.

    Tell the docs at Standford to call it whatever they like...palliative...snoopy or Mickey Mouse, as long as they can convince the insurance folks to allow procedures you need.

    My best wishes to you as you head to Standford. Any idea of when you will be going?

    Take care and get all the beach time you can,

    Marie who loves kitties
  • imagineit2010
    imagineit2010 Member Posts: 152 Member
    #4
    some good news
    Confusing but I'd take most of that as good news, especially the CEA. What are you taking for treatment and why are your platelets so low? My platelets were at 120 and the Onc said he would continue Xeloda down until 75. Luckily 120 was as low as they went.
  • Annabelle41415
    Annabelle41415 Member Posts: 6,742 Member
    #5
    Progress
    It seems like you have been steadily progressing in the right direction and that is why your doctors are so puzzled because you have shown them what you are made of. Hopefully, Standford will come up with the option to do surgery and get those pesky cancer cells out of you. Keep us updated.

    Kim
  • msccolon
    msccolon Member Posts: 1,917 Member
    #6
    sounds like good news to me~!
    So glad they finally got around to you on the tumor board! You've had to wait a long time! I agree, call it what they might so long as they call you to the OR! You sure had a dramatic drop in your CEA! That is really good news! I can't believe they would even consider you to not be a candidate, you sound like a perfect candidate to me! Good luck at Stanford!
    mary
  • AnneCan
    AnneCan Member Posts: 3,673 Member
    #7
    Winter Marie
    I am glad the tumour board looked at your case. It sounds like you have had a wonderful response to chemo. Good luck at Stanford.
  • herdizziness
    herdizziness Member Posts: 3,624 Member
    #8
    imagineit2010 said:

    some good news
    Confusing but I'd take most of that as good news, especially the CEA. What are you taking for treatment and why are your platelets so low? My platelets were at 120 and the Onc said he would continue Xeloda down until 75. Luckily 120 was as low as they went.

    Chemo Treatments
    I was on Avastin, Oxiplatinan and Xeloda (3000mgs a day for two week cycle), he said platelets low due to the chemo, but suggested my smoking wasn't helping them recover either. So have to quit. That's going to be the hardest part of cancer so far for me, quitting smoking.
  • tootsie1
    tootsie1 Member Posts: 5,044 Member
    #9
    Finally!
    Whew! I'm glad you got on the tumor board and wish you fabulous success at Stanford.

    *hugs*
    Gail
  • Aud
    Aud Member Posts: 479 Member
    #10
    Winter Marie
    congrats on the CEA count! sounds like you had a good response. prayers to you and good luck at Stanford.
    ~Audrey
  • idlehunters
    idlehunters Member Posts: 1,787 Member
    #11
    Aud said:

    Winter Marie
    congrats on the CEA count! sounds like you had a good response. prayers to you and good luck at Stanford.
    ~Audrey

    Winter Marie
    Hey..... it really sounds like things have done a complete turnaround on you. that is fantastic news!!! I am so happy for you. Man, that CEA drop is unreal!!! Keep it up girl!!

    Jennie
  • Nana b
    Nana b Member Posts: 3,030 Member
    #12
    idlehunters said:

    Winter Marie
    Hey..... it really sounds like things have done a complete turnaround on you. that is fantastic news!!! I am so happy for you. Man, that CEA drop is unreal!!! Keep it up girl!!

    Jennie

    If we are talking about the
    If we are talking about the liver Dr Robert Osorio in San Francisco is awesome!!

    http://maps.google.com/maps/place?oe=utf-8&rls=org.mozilla:en-US:official&client=firefox-a&um=1&ie=UTF-8&q=dr+osorio+san+francisco&fb=1&gl=us&hq=dr+osorio&hnear=San+Francisco,+CA&cid=17572163459560105457
  • Lilmiss82
    Lilmiss82 Member Posts: 257 Member
    #13
    Nana b said:

    If we are talking about the
    If we are talking about the liver Dr Robert Osorio in San Francisco is awesome!!

    http://maps.google.com/maps/place?oe=utf-8&rls=org.mozilla:en-US:official&client=firefox-a&um=1&ie=UTF-8&q=dr+osorio+san+francisco&fb=1&gl=us&hq=dr+osorio&hnear=San+Francisco,+CA&cid=17572163459560105457

    Hi Winter Marie,
    Got on the band wagon a little late, so as many others have said already mentioned the drop in your CEA is awesome!! Stanford is a great hospital and don't worry everything will work out.
  • Sonia32
    Sonia32 Member Posts: 1,071 Member
    #14
    Winter Marie
    Hugs glad they have finally got round to you. Good luck at Stanford
  • lisa42
    lisa42 Member Posts: 3,625 Member
    #15
    It IS good news
    It most definitely IS good news that they can't see the masses anymore and that your CEA has gown done amazingly!!! I know it's weird when you find yourself wishing things showed up as worse than they are just to please the insurance requirements for surgery. Arrgghh- don't get me started on insurance! I think what you're doing, with going to Standford for another opinion is a good idea.
    I, too, have always remained not a surgical candidate because of too many widespread tumors (they're called "innumerable" on my scan reports and are everywhere, in every part of my lungs. Weird to think I have so many tumors in my lungs and have absolutely no symptoms or problems at all in the lungs). I'd be a candidate for surgery or cyberknife on my liver, but the condition of my lungs always interferes with my eligibility. I always end up doing more chemo, because that seems to be the only way to keep my lung tumors from growing and taking over.

    Well, please do let us know what happens at Stanford- I'm quite interested in what they have to say. I am hoping that they conclude that the tumors can't be seen because they are GONE!!!!

    Hugs,
    Lisa
  • ktlcs
    ktlcs Member Posts: 358
    #16
    lisa42 said:

    It IS good news
    It most definitely IS good news that they can't see the masses anymore and that your CEA has gown done amazingly!!! I know it's weird when you find yourself wishing things showed up as worse than they are just to please the insurance requirements for surgery. Arrgghh- don't get me started on insurance! I think what you're doing, with going to Standford for another opinion is a good idea.
    I, too, have always remained not a surgical candidate because of too many widespread tumors (they're called "innumerable" on my scan reports and are everywhere, in every part of my lungs. Weird to think I have so many tumors in my lungs and have absolutely no symptoms or problems at all in the lungs). I'd be a candidate for surgery or cyberknife on my liver, but the condition of my lungs always interferes with my eligibility. I always end up doing more chemo, because that seems to be the only way to keep my lung tumors from growing and taking over.

    Well, please do let us know what happens at Stanford- I'm quite interested in what they have to say. I am hoping that they conclude that the tumors can't be seen because they are GONE!!!!

    Hugs,
    Lisa

    Marie
    This si good news, CEA from over 2000 to 8! obviosuly something is going right. i think someone ha said it already but who cares what they call it as long as the surgery happens!

    Best of Luck at Standford

    Kathy
  • sfmarie
    sfmarie Member Posts: 602
    #17
    Stanford
    I live nearby and would love to help you in any way I can. It is a great hospital.

    Marie
  • Buzzard
    Buzzard Member Posts: 3,043 Member
    #18
    sfmarie said:

    Stanford
    I live nearby and would love to help you in any way I can. It is a great hospital.

    Marie

    See what the sunshine will do if you let it shine in !!!
    Relax a little and enjoy the beach and all the beauty that surrounds you.......Love to you, Buzz

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