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Viewing 15 posts - 1 through 15 (of 43 total)
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  • in reply to: Amy Berman Reflects On ‘Living Life In My Own Way’ #82790
    betzeegirl
    Participant

    WOW, that’s inspiring

    in reply to: Hemp oil #73891
    betzeegirl
    Participant

    Hi sadwife… I think it’s great that the hemp oil is working so well. My husband was also dx at age 57 and though he was able to have surgery, the surgical outcome wasn’t too good. (surgeon couldn’t get all the cancer.) He did have chemo and radiation and is now feeling very good. He’s definitely changed his diet and tries to exercise (with a bit of nagging from me!) since one of our oncs said “exercise is as important as chemo.”

    I know the prognosis still remains poor, though, and just pray that I would enjoy each day that I have my husband, one day at a time, because no one knows when it’s their time to go….with cancer you can actually sort of get ready for it. You and your husband are in my prayers.

    Oh one more thing–the way I handled the diagnosis was to figure out the top specialists and get second and third opinions about his situation. I’d try getting a second opinion from Sloan Kettering, maybe.

    in reply to: The Impact of Nutrition #74177
    betzeegirl
    Participant

    Hi Scheitrumc/Carl,

    VEry interesting–I agree with what your daughter discovered on the nutritional front. (My husband has ICC and I’ve been grappling with the nutritional end of things on his behalf.) Do you/your daughter have any thoughts about coffee? My husband drinks a pot per day, and I think it’s just acidifying his system. I’m wondering if you have any input on that. (Is green tea better?)

    Audrey/Betzeegirl

    in reply to: Gout? #74043
    betzeegirl
    Participant

    my husband has had gout for years, and it was especially bad in the year he was diagnosed…now, after his surgery and treatment, it seems to be at bay. so maybe you’re onto something!!

    betzeegirl
    Participant

    Hi there,
    Check out Laura York’s blog…http://thecancerassassin.blogspot.com/
    She was dx with stage 4 in 2010 and is a real fighter –her story has really encouraged me (my husband dx w stage 4 last april)

    in reply to: Hey! #73981
    betzeegirl
    Participant

    Hi Danna,

    Dr Javle is tops, but you may also want to run your situation by Dr. Kato at NY Presbyterian Hospital (622 W 168th St # 105 New York, NY 10032 (212) 305-5101

    He specializes in the most difficult cases!
    My prayers go out to you and everyone else on this board. (My husband was dx last April, and though he was able to have surgery the outcome was not too good.)

    in reply to: CA 19-9 is normal! #72641
    betzeegirl
    Participant

    woohoo!!!!

    in reply to: How things are going #73704
    betzeegirl
    Participant

    Thanks so much allowing us to go through all of this with you. Your post brought me to tears. You and Lauren are my heroes.

    love and prayers,
    Audrey

    in reply to: New member — Wife recently diagnosed with ICC #72288
    betzeegirl
    Participant

    Jason,

    So sorry you’ve had to join this family off patients/caregivers dealing with CC. (my husband was dx april 9 2012 and had a resection, and is doing well at the moment, but i’m always aware of the possibility that the CC could return, especially since it metastasized to a distant lymph node and there is/was perineural invasion.)

    Anyway–even though you live on the west coast, you may want to run your situation by Dr. Tomoaki Kato ((212) 305-5101) since he performs surgeries that no others would dare. Another great doc, at Sloan, is Dr. Fong. Of the two, I’d say that Kato is more “outside the box” and you may just want to see what he has to say about your wife’s case.

    Glad we can all be here for you,

    Audrey (aka betzeegirl)

    betzeegirl
    Participant

    Jason,
    Have you heard of Dr Kato at Ny Presbyterian? He does surgeries that no one else would attempt. I’d contact him for another opinion. Holly22a on this board is seeing him and is very impressed from what I gather. There is also a great onc at NYP named Abby Siegel, who we saw for a second opinion.

    You are in my prayers…my husband was dx a year ago, and Dr Fong at sloan operated on him. (margins weren’t clean and he had nodal mets–BUT…he’s doing great at the moment, so we’re just enjoying each and every day!!)

    Audrey aka betzeegirl

    I googled Kato just now and here’s his contact info:

    Dr. Tomoaki Kato
    622 W 168th St # 105 New York, NY 10032
    (212) 305-5101

    betzeegirl
    Participant

    hi! thanks for all this work!! i’d love to take a look, but i think you’ll have to upload that file…it’s pointing to your hard drive

    in reply to: Getting 2nd opinion #70067
    betzeegirl
    Participant

    mary– my husband sees dr goodman and we like her. kris–have you ever thought about dr abby seigel as a second opinion? we LOVE her

    betzeegirl
    Participant

    hi gavin! i can’t access this journal article (some i can, since i’m affiliated with an academic institution–my institution doesn’t subscribe to this one.) can you tell me if PNI WITHOUT elevated pre-op CA19-9 is prognostically significant? thanks!

    in reply to: good news: tumor markers down #68047
    betzeegirl
    Participant

    WOOHOO!! So glad to hear that news, holly!

    in reply to: Sister with late diagnosis #67950
    betzeegirl
    Participant

    Joyfulnoise,

    This is really upsetting. Others will weigh in, but I’d suggest that you contact Dr. Yuman Fong of Sloan (he did my husband’s surgery and does difficult surgeries) and Dr. Kato of Columbia Pres (he attempts surgeries no one else will do) just to make sure surgery isn’t still a possibility. Let me know if you need more info. And I’m praying for your sister and her family.

    God Bless and keep you.

    Audrey

Viewing 15 posts - 1 through 15 (of 43 total)