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Viewing 15 posts - 106 through 120 (of 134 total)
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  • #83942
    math-major
    Member

    Chuck you are unbelievable. That article was fantastic. I know you have helped many people. I’m so proud of you and love you very much. Every day we have with you is a blessing or as Aimee says a miracle.

    #83941
    genevieve
    Participant

    Hi David,

    Sorry to hear about your diagnosis and that it took so long. Have you thought of going to one of the big hospitals in Sydney for another opinion? My husband had one of his three resections for intrahepatic cc at the Mater in North Sydney, with a surgeon who also works at RPA. RPA would I presume see more and be more familiar with cc treatment than where you live.

    Regards,
    Genevieve

    #83940
    lainy
    Member

    Welcome, David, to the best place to be for CC support but sorry you had to find us. Yes, we do have members from Australia along with a great Nurse, Janet. I hope she is still checking on us and sees your post. I am sending out an S.O.S. for any members in Australia to respond to your post.
    Never apologize to us for anything you do on this site! We do not grade papers.
    I cannot believe you have gone 28 months with no treatment. You might try our search engine at the top and type in Australia and a ton of posts will appear from members there.
    Good for you by standing your ground at the hospital demanding to be seen. Wow.
    Please share with us what treatments you have had and how you are doing now. You are not alone as we all care.

    #83939
    delpak-dave
    Member

    Hello there, my name is David, I am not sure if I have posted in the right area of this site so if not can someone please let me know, I have been watching this site for a short time and I am learning more about my Cancer in those few days than any of my treating Doctors have told me, some of the treatments and terms I have seen on this site have never been mentioned to me and to be honest this has frightened me, not through any fault of this site but rather the thought that I may have wasted a load of time traveling the path that I have to date.

    I am 51 years old, I was diagnosed on 14th March 2014 with Intrahepatic Cholangiocarcinoma (I am sorry if I have spelled this incorrectly), my diagnosis only came after my seeing a number of different Doctors over at least a period of 28 months of being told there was nothing wrong with me and I just knew that something just was not right and so one night I phoned emergency services and was taken by Ambulance to the local Hospital and basically refused to leave for 3 days.
    While in Hospital I was able to watch a bit of TV and what I can only believe to be a sign, I watch 4 different Medical shows over those three days and from the symptoms that patients were describing on the TV shows I had them all but no pain other than one time that I could recall over that 28 months of seeing Doctors and when I told the Doctors of what I had watched I was told that they felt that I was suffering from Depression (and now I wish they had been correct) they then agreed to at least do a CT scan and then my journey began.

    I will stop for the moment, because I have not had anyone to talk to about this and now I have found your site I fear that I may type out a novel and I do not want to sound like I am crying victim but I really could use as much information as possible as it is becoming very evident that not a lot of experience with this Cancer is available in my location yet I have no intention of just laying down and plan to fight this as much as possible.

    I would love to know (if allowed) to know if there are any other members here in Australia? but not limited to that and would share with anyone anywhere.

    I am sorry for the drawn out post, I do appreciate the time anyone may take reading my post.

    My Kindest Regards:

    DAVID L

    #83938
    gavin
    Moderator

    Hi Nikole,

    Welcome to the site. Sorry that you had to find us all here and I am sorry to hear about your dad. But glad that you’ve joined in with us now as you are so in the best place for support and help and will get loads of both from us all. Real glad to hear that you are looking to get further opinions for your dad as to treatment options and I so hope that you have much success with this.

    Please let us know how things go with this and know that we are here for you.

    My best wishes to your dad,

    Gavin

    #83937
    lainy
    Member

    Dear Nikole, welcome to the best place to be for CC support and on becoming past of a remarkable family. I am so sorry to hear about your Father but glad to read you are getting right on that 2nd opinion. We are huge believers in 2nd 3rd and even 4th opinions. Because CC is so rare, the best thing you can do is get that other opinion. Go with your gut on these things as it will not fail you. You were not comfortable with your present ONC so it is time to see another. I am posting some sites we send to new members that may be of help to you. Please keep us in the loop on your Father’s progress, you are NOT alone you have lots of family here.

    Newly diagnosed:
    http://cholangiocarcinoma.org/the-disease/newly-diagnosed/
    Free complimentary Book or e-mail download:
    http://cholangiocarcinoma.org/news/foundation-resources/
    Biliary drainage – stent information card
    http://cholangiocarcinoma.org/biliary-emergency-information-card/
    Register for a CURE
    The International Cholangiocarcinoma Registry
    http://cholangiocarcinoma.org/professionals/research/patient-registry/

    #83936
    nikole
    Member

    Sandy,

    When I went to bed last night, I was questioning whether or not to look into that 2nd, 3rd, and 4th opinion. Thank you…because when I saw your post I got on the phone and scheduled with another onocologist. I am hoping we find that one that makes us comfortable with what he/she has to say.
    I appreciate you taking the time to reply to my post. I find so much comfort in knowing others like you are there to listen and give advice.

    God bless.
    Nikole

    #83935
    nikole
    Member

    Duke,

    Thank you for responding to my post. After reading your posts I was hoping that you would respond to the mine. I find strength and hope in reading these from everyone. I knew you were from Ohio and were battling like my father. It is helpful to hear from others who have dealt with the same issues as my father and I. Especially trying to find someone with a greater knowledge of cholangiocarcinoma. I will look into Dr. Sohal at the Cleveland Clinic. We were able to get an appt with Dr. Meropol from University next week and hope he is more optimistic than our previous onocologist. I will keep you updated with any new information we get. You and your family are in my thoughts and prayers.

    Nikole

    #83934
    dukenukem
    Member

    Nikole –

    I am being treated by Dr. Davendra Sohal (he is treating 15-20 patients with CC and similar liver cancers) at the Cleveland Clinic. I also met once with Dr. Bassam Estfan from the Clinic. Both are very dry, almost removed emotionally, but I have good feelings about them. They strike me as very knowledgeable. My previous onc was at the Seidman Cancer Center in Mentor, OH. She specializes in women’s breast cancer. That Center has seen only 4 CC patients in the last 3 years. She has run out of treatment options and nothing else to offer. Dr. Sohal had a possible trial (my platelets were too low to get into it) but also two more chemo options, one of which I am using now.

    I never got the info I requested about University Hospitals and their CC experience.

    I would not rule out Mayo in Mn or MDA in Tx (Dr. Javle) as places for second opinions.

    Duke

    #83933
    sandynyc
    Member

    Dear Nikole
    I am so happy you found this site. You will get a lot of great advice and direction, and I know there are a lot of resources in your area. I am sure someone will weigh in soon with recommendations and referrals.
    The one thing I learned early on – and I know everyone will tell you- is to get a 2nd, 3rd, even 4th opinion until you feel comfortable with what you are hearing.
    You will learn a lot, more than you ever imagined, about this horrible disease, but with knowledge will come understanding and power to make informed decisions.
    Good luck and know we are all with you.
    Sandy

    #83932
    nikole
    Member

    I am here because my father was recently diagnosed with stage 4 cholangiocarcinoma. He is 61 years old and it has spread to his abdominal wall. We live near Cleveland, Ohio and are having a great deal of difficulty getting an oncologist who is experienced in this cancer. He was told by a gastroenterologist from the Cleveland Clinic to go home and get his affairs in order. They were not interested in stinting his bile duct and it was necessary for him to feel better. We found a surgeon at University who gave us hope and was able to place a stint in one of his bile ducts. His bilirubin levels dropped and he began to feel better. The surgeon recommended an oncologist. The onocologist we were recommended to was very negative. He gave all the cons to chemo and said it was the only potential option. Quite honestly, I feel he didn’t want to give it to my father stating it probably would not work. Needless to say, we are in the process of trying to find another onolcologist . We feel lost! Do any of you have recommendations for a doctor in Cleveland, Ohio area? I have a call into a doctor from Washington University St. Louis because it has been a battle finding someone experienced here. Thank you for taking the time to read my post. Take care and God bless.

    #83931
    marions
    Moderator

    Stevie….good luck with your visit and please mention your pain issues. There is plenty of prescription medication available.
    Hugs,
    Marion

    #83930
    mbachini
    Moderator

    Stevie,

    Welcome to this site. You will find much valued information and support here. Waiting is so very hard. Please know we are here to support you in anyway we can. I will be sending good thoughts and prayers your way. Please keep us posted on your upcoming appointment.
    Melinda

    #83929
    middlesister1
    Moderator

    Dear Stevie,

    Welcome to the group; we are always here to listen. I’m glad that you have seen on this board, that not all outcomes are as dire or hopeless as some statistics (or even doctors) may lead you to believe.

    I hope that come 3/10, you will come away from the appointment with a plan on how to move forward. I think we all agree waiting is lousy (scan anxiety is a good example). Please let us know how you make out.

    Take care,
    Catherine

    #83928
    lainy
    Member

    Dear Stevie, Welcome to the best place to be for CC Support, sorry you had to join us. I am very glad you are getting another opinion at Mayo. We are big believers In 2nd and 3rd opinions. Different eyes, different suggestions. I know that when you are first diagnosed it is a huge kick to the gut and perhaps you can have your ONC order you a mild anti depression RX to help take the edge off. Attitude is extremely important as no one wants their energy wasted on stress. Here are some links you might check out and please let us know how your appt. at Mayo goes as we truly care.

    Newly diagnosed:
    http://cholangiocarcinoma.org/the-disease/newly-diagnosed/
    Free complimentary Book or e-mail download:
    http://cholangiocarcinoma.org/news/foundation-resources/
    Biliary drainage – stent information card
    http://cholangiocarcinoma.org/biliary-emergency-information-card/
    Register for a CURE
    The International Cholangiocarcinoma Registry
    http://cholangiocarcinoma.org/professionals/research/patient-registry/

Viewing 15 posts - 106 through 120 (of 134 total)
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