Australia

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Viewing 14 posts - 1 through 14 (of 14 total)
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  • August 11, 2015 at 9:15 am #89073
    genevieve
    Spectator

    Hi Karen,

    I’ve sent you a forum email again, hope you get it.

    Otherwise you can click on my name and send me an email.

    Hope to chat soon,

    Genevieve

    August 10, 2015 at 11:24 pm #89072
    arapro
    Spectator

    Good Luck and stay positive ! I lived in Autralia for eleven years, and now I am in Caracas Venezuela, Diagnosed on march :) Stay Strong !

    August 10, 2015 at 1:07 pm #89071
    lainy
    Spectator

    If you click on the name to the left of the post it will take you to an email address.

    August 10, 2015 at 9:06 am #89070
    kpowen
    Spectator

    Thank you to everyone who has replied to my post. Genevieve I would love to correspond via email but I’m not sure how to get your home email address can I find it through this site?
    We are off to the Royal Melbourne early september to see a medical oncologist who specialises in the mutations identified in the CARIS report, he also handles the Phase 1 clinical trials so fingers crossed that my husband will be eligible for one!
    He is still looking great (I’m a bit biased I know!) and feeling good just a little tired after the chemo.

    August 6, 2015 at 4:52 am #89069
    apk
    Spectator

    Hi Karen,

    I can’t really comment in regards to Peter Mac as we never had any dealings with them.

    But during my father’s illness we did deal with a great research team as Royal Melbourne, who were behind a number of clinical trials targeting specific mutations.

    May be worth speaking to them also.

    July 28, 2015 at 5:57 pm #89068
    gavin
    Moderator

    Good luck with the chemo Moose, hope that it all goes well and works very very well. Will keep everything crossed for you and please let us know how it goes.

    My best to you,

    Gavin

    July 28, 2015 at 10:18 am #89067
    middlesister1
    Moderator

    Moose,

    We’re all hoping that you get positive results from the chemo.

    Take care,
    Catherine

    July 28, 2015 at 9:23 am #89066
    genevieve
    Spectator

    Moose, I hope the chemo has been going okay for you.

    Karen, if you don’t get my forum email and would like to chat, please feel free to send one to me.

    Regards,

    Genevieve

    July 27, 2015 at 11:26 am #89065
    moose
    Spectator

    HI Karen,
    I am really sorry to read about your husband. I am also 45, live in Melbourne. I have CC and tomorrow will have my last treatment of chemo. It is a very scary and worrying time. I had all my treatment at Frankston hospital, so I can’t give you any advice on Peter mac but I am very happy if you want to email me any questions.
    moosemurf@dodo.com.au

    Best of luck for all that you and your husband have ahead of you.

    Moose

    July 26, 2015 at 8:53 pm #89064
    gavin
    Moderator

    Hi Karen,

    Welcome to the site. Sorry to hear what you and your husband are going through right now but so glad that you have joined in with us here as you will both get loads of help from everyone. We do have some Australian members here on the site and I know that they will be happy to speak with you. Thank you Genevieve!

    I so hope that the chemo works very well for your husband and that it works as it should. Do you mind me asking what type it is etc? And when is your husbands next scans?

    Please keep on coming back here as you both are not alone in this now. We are all here for you and we care.

    My best wishes to you and your husband,

    Gavin

    July 26, 2015 at 3:01 am #89063
    genevieve
    Spectator

    Hi Karen,

    We are also in Canberra…my husband has had intrahepatic cc, three resections and two lots of chemo. We also had molecular profiling done by Caris after the last resection.

    I’d be happy to chat and will send you an email. I’m quite uncomfortable online so rarely post here.

    Best wishes,
    Genevieve

    July 25, 2015 at 11:48 pm #89062
    marions
    Moderator

    Karen….albeit intermittent responses are included, this link shows posts from our Australian members:
    http://www.cholangiocarcinoma.org/punbb/search.php?search_id=2085486119
    As Lainy mentioned, it is unlikely for many to regularly visit our board, hence you might want to reach out to them by personal e-mail.
    Click on name – another window will open with their e-mail address.

    Good luck
    Hugs
    Marion

    July 25, 2015 at 3:39 pm #89061
    lainy
    Spectator

    Hello. Karen and welcome to the best place to be for CC support which includes our remarkable family.
    YES, we have quiet a few members from Australia. Try using our search button at the top and type in Australia and see if posts pop up. They do watch this Board so hopefully some will be coming along with more information for you.
    Below is a site you might find helpful and please keep us updated on your husband as we really care! Below is a site you may find helpful:

    http://cholangiocarcinoma.org/newly-dx/

    July 25, 2015 at 4:36 am #11534
    kpowen
    Spectator

    Hi we live in Canberra Australia and my 45 year old husband was diagnosed with extra hepatic CCC xmas 2015. He has liver and lung mets which responded to gem/cis for a short period of time unfortunately he couldn’t continue with this treatment as his platelets weren’t recovering…we sent pathology off to Caris life sciences in the U.S for further tumor profiling and he is now on a new chemo combination.
    I am just wondering if there are any Australians in this forum who I could chat to. We are hoping to go to the Peter McCallum Cancer institute in Melbourne in the next couple of weeks just to get another opinion re treatment and for them to review the tumor profiling apparently they see these reports a lot.
    We are fortunate in that my husband is looking great and feeling great (apart from fatigue on chemo days) we have a 9 year old son so he has plenty of incentive to live as long and as well as he can!
    Whoever started this forum, thank you it is a comfort to be able to talk to others who are dealing with this disease.

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