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Viewing 15 posts - 1 through 15 (of 138 total)
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  • in reply to: COMMENTARY HERE IS PUBLIC, GOOGLE YOUR NAME #80604
    thebompie4
    Member

    Just FYI you CANNOT be fired from a job because you have cancer.

    It is considered a “disability” and IF someone chose to fire you
    for having cancer they would have a big a** lawsuit on their
    hands.

    They can try, but you have a disability claim against them that would
    be big trouble for ANY employer that chose to fire you for having cancer.

    You are protected with the ADA (Americans with Disability Act–something
    like that…)

    in reply to: Intro & looking for the facts of cholangiocarcinoma #78987
    thebompie4
    Member

    Kathy

    we are in SLC as well. My husband is Stage 4 w/mets to lungs and lymphs.
    we’ve been fighting this since March of 2012 (so are approaching the 1 yr
    mark soon)

    He’s responded well so far to chemo and had Y90 in November.

    Last PET showed some new growth and after a 2 1//2 month break
    we’re headed back to chemo next week (i say “we” since cancer
    is a “we” thing).

    Anyway, if you want to contact us at all to talk Dr’s or anything
    PLEASE feel free to email me: dorienn@excite.com

    My husband is 45, we have 4 kids. It’s been an emotionally
    exhausting year.

    We’ve been to the Huntsman w/Dr Sharma and at IMC w/Dr Whisenant.
    and have consulted BOTH for every single procedure and every single
    step of the way on this journey.

    Not sure you’ll see this, but wanted to reach out from one SLC person
    to another.

    Dorien Nielson

    in reply to: Help – your advice needed #77502
    thebompie4
    Member

    I have to say that we DID do a lot of research on Y 90 and I have
    to say that I asked for people’s advice, help and personal stories
    (of which we got the 2 or 3 you mentioned.)

    Here, on this board. TWICE.

    I should probably leave well enough alone but OUR HUGE
    frustration with this board is that we come here seeking
    advice and help and opinions from people who are going through
    this…

    almost each and every time I post a question, hardly anyone
    answers (which of course is not very helpful)

    when we ask for “real life stories”, almost no one ever answers.

    We are almost always pointed in the direction of hard to understand
    and complicated medical journals which are not helpful to “lay people”
    like us. I’m sorry that we’re not as smart as some of you here on
    this board.

    Which is why we come looking for practical help–real answers
    from real people fighting this cancer. And mostly I feel we
    get a lot of fluff and silence. (After speaking with 4 doctors FIRST)

    I truly and sincerely wish that more people, REAL PEOPLE, would
    pipe in with advice, personal stories and helpful answers of
    WHAT THEY EXPERIENCED.

    I feel extremely frustrated that IF Y 90 is a “last resort” and
    has almost all “bad outcomes” that when I asked weeks and weeks
    ago, SOME ONE WOULD HAVE BEEN KIND ENOUGH OR BOLD
    ENOUGH TO ANSWER MY QUESTION HONESTLY.

    We come here making (LITERALLY) life and death decisions
    for people we love, looking for help–and (I personally) don’t
    feel like I find very many answers here.

    Sorry for the vent…feeling VERY (!!) frustrated that we have now
    done a “bad thing, last resort thing with almost all bad
    results” on my husband….

    And the one place where I could have found some real life
    HELP—and no one felt obligated or like helping us BEFORE hand
    when we were BEGGING for some good answers to help
    make this decision.

    :(

    in reply to: Help – your advice needed #77497
    thebompie4
    Member

    So I’m even more curious–have people here only had BAD
    outcomes/experiences with radioembolization?

    have there been no good outcomes?

    yikes…i wish people would have chimed in when i asked
    for personal experiences BEFORE kyle had this procedure.

    i guess we will continue to hope that we are a GOOD
    outcome and will have a good story for board members
    to hear then. :)

    here’s hoping!

    in reply to: Help – your advice needed #77495
    thebompie4
    Member

    Wondering why you choose radioembolization as your LAST option?

    just curious…since my husband just did this.

    in reply to: update on me #75645
    thebompie4
    Member

    best wishes to you holly in the fight against this monster!

    i have plenty of other names for CC-but none of them are
    appropriate for this board. :)

    dorien

    in reply to: My husband is going in for Y 90 this tuesday #77248
    thebompie4
    Member

    Thank you Mary and Kris,

    yes being a caregiver IS overwhelming.
    and we very much look forward to a break in all of the
    cancer hustle and bustle.

    who knows where we will be next christmas-so we will
    enjoy here and now!

    a good lesson we’ve learned with this disease!

    best wishes to all of you as well!

    dorien

    in reply to: My husband is going in for Y 90 this tuesday #77245
    thebompie4
    Member

    Well holly we know that NOTHING for Kyle is curative, sadly he has mets
    in lungs and lymphs, so this is just one more stab at his liver tumor
    to “buy us more time” in the words of all the drs.

    they all said this is a band aid and to expect the cancer to come back.

    (even when/if it kills some of it off for now)

    But we will be happy to take a chemo break over the holidays and enjoy
    some “no visits to chemo” for a month!

    I am off to read your posts and see your experience! :)

    in reply to: My husband is going in for Y 90 this tuesday #77242
    thebompie4
    Member

    Just a quick update…

    Kyle had Y 90 on Tuesday morning. Drs said it all went well.

    We are now 4 days out and Kyle has felt
    really really good. A little tired, a little pain that comes and goes
    in his liver (he says he can feel right where they targeted the Y90)

    So far (knock on wood) no bad side effects. He has been
    resting and taking it pretty easy, but also cleaned bathrooms
    today and ran Saturday errands with me.

    Obviously no results will be known for weeks/months to come.

    We meet with Drs on Weds to discuss how long he stays
    off chemo. We have had 4 drs give us a split opinion on this.

    2 say stay off a few months and take a rest.
    2 say continue right back on to chemo.

    We will most likely take a break through the new year
    regardless unless they “force” him back on (although I am
    pretty sure they ball is in our court!)

    Anyway, thought I would share that (thus far) his side
    effects from Y90 have been minimal.

    in reply to: My husband is going in for Y 90 this tuesday #77241
    thebompie4
    Member

    Thanks Jason…

    and everyone!

    We will (well I will) keep you posted!

    Kyle reads, I type! :)

    Thank you all!

    in reply to: My husband is going in for Y 90 this tuesday #77238
    thebompie4
    Member

    Thanks Kris :)

    in reply to: Daughter of Newly Diagnosed 58yo Mom #70607
    thebompie4
    Member

    Good to hear— i especially liked your update on the Y 90 as my
    husband is undergoing this on Tuesday of this week!

    Good to hear about good results.

    He had his mapping two weeks ago and all went well there.

    Thanks for sharing this information!

    dorien

    in reply to: My husband is going in for Y 90 this tuesday #77236
    thebompie4
    Member

    Thank you Pam and Patti for chiming in!

    It’s great to hear “real life” stories about this!

    We appreciate it a lot.

    He had his “mapping” done two weeks ago–
    where they go in first to check everything out–

    (same groin spot that they will enter again on Tuesday)

    It was a little sore and pretty bruised–so we will see how
    the repeat entry effects it this time.

    We are hoping he falls within the “norm” of reactions–

    pressing onward! :)

    Dorien

    in reply to: My husband is going in for Y 90 this tuesday #77232
    thebompie4
    Member

    Thanks Lainy! Sadly, or gladly, I have learned way more
    about cancer than I ever wanted to in my life! :)

    But we will keep on keeping on! That’s all we can do. :)

    in reply to: New member — Wife recently diagnosed with ICC #72322
    thebompie4
    Member

    Great news Jason! I’ve been wondering how you guys were doing!

    Kyle just finished round 11 (or was it 12?) of Gem/Cis….he’s still
    doing well with the drugs. Had some ear ringing, but hearing tests
    indicate he is well within normal ranges….

    Our 3 opinions here in Utah all agreed radiation was a great next
    step to zap his liver tumor (he has one only). So he goes in
    for y 90 on Tuesday.

    And yes, I agree, new stuff sure makes one nervous!
    So we are nervous, yet hopeful!

    Best wishes to you and your wife in the continued fight against
    “this monster” (good term for it–my name for it usually includes
    some not very nice profanities!)

    Keep fighting the good fight!

    Dorien (and Kyle)

Viewing 15 posts - 1 through 15 (of 138 total)