My dad diagnosed in 2013 69 years old…….

Discussion Board Forums General Discussion My dad diagnosed in 2013 69 years old…….

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  • #86731
    mbachini
    Moderator

    Paula,
    I am so glad you are seeking other opinions, Cleveland Clinic is a great place to start! It sounds like your father is a fighter! Please keep us posted of new outcomes and results of another opinion! Prayers for you and your father!
    Melinda

    #86730
    gavin
    Moderator

    Hi Paula,

    Welcome to the site. Sorry that you had to find us all and I am sorry to hear about your dad, but glad that you have joined us all here as you are in the best place for support and help and I know that you will get loads of each from everyone here. Thanks for sharing what your dad has been through and he has been through much hasn’t he.

    My dad also had PDT with a metal stent placed after diagnosis and that helped him enourmously with the jaundice. It sounds like your dad is doing much better with the metal stents than the plastic ones. Yes the metal ones are permanent but they can be cleaned out if clogging becomes and issue. Great that he has gained weight as well and getting his strength back too!

    Lainy is right about seeking further opinions and I second that view. Were the med team that your dad had experienced in dealing with patients with CC? Having a med team around your dad that is experienced with CC is crucial in my opinion throughout everything. Here is a list of major treatment centers in the USA –

    http://cholangiocarcinoma.org/for-patients/major-cancer-centers/

    I’m not sure how close you are to any of these hospitals or if your dad is up to travelling but if it was me then i would be looking to get my dad seen by someone in one of the paces in the link above. Your dad does sound like a fighter and from what you say I would guess that he is not ready for hospice care at this point, good on him!

    I know that you will get recommendations from people on here about facilities. We also have this thread here which will be of use to you and is created by our members –

    http://www.cholangiocarcinoma.org/punbb/viewtopic.php?id=3126

    Link to all Cleveland Clinic posts here on the site –

    http://www.cholangiocarcinoma.org/punbb/search.php?search_id=747446894

    Hope some of these are of use to you Paula and please keep us updated on how everything goes. We are here for you and we care.

    My best wishes to you and your dad,

    Gavin

    #86729
    lainy
    Spectator

    Paula, we have a list of Hospitals on our Home page, I am not sure exactly where you were. We have members at Cleveland Clinic. I would get him in ASAP. I cannot believe those ONCS did not order Scans. Wondering what they based their decision to do hospice on?? Just a suggestion keep all your notes in case you need them. I hope you can get your Dad into Cleveland Clinic as quickly as possible. Some times this CC acts quickly some times slowly, but we never know. Let us know and I know you will be hearing from other members here. You he just joined the best family in the world. Here are some helpful sites for you:

    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/

    #86728
    paulap0480
    Member

    Thank you! We are looking into Cleveland Clinic. He is not currently on any treatments nor has he had any scans. When they sent him home they sent him with hospice but he is a fighter:) We are hopeful to get something scheduled soon with new docs! The two that sent him home were the only ones that he has seen since being diagnosed. Any recommendations would be greatly appreciated!

    #86727
    lainy
    Spectator

    Hello, Paula, welcome to the best place to be for CC support. What a terrible journey your Dad has had to take so far and a good thing he changed the first 2 Docs. Are they doing any Scans to see if in fact the Cancer is there? You want to make sure he is being treated by an ONC with lots of experience with CC and at a big hospital where they also treated CC. Just ask them and they will tell you if they are real experienced. I believe that he is at a comfortable point now and so that is the time to really look in to his situation. You may have to travel to a larger city to find the ‘team’ experienced to help him. This is not a Cancer that can be ignored because he is feeling better. Good luck and please keep us posted on his condition.

    #10947
    paulap0480
    Member

    I wanted to tell you a little about my dad. He is 69 yo, dx with cholangiocarcinoma in July 2013. He was dx by just a routine ERcp. He also has ulcerative colitis and primary a sclerosing cholangitis. At that point we were trying for a liver transplant but they had denied him because of some small distant blockages in the distal part of the heart. That was in August. In late September he had Pdt and started chemo in October. He did 8 rounds (16 tx) of gemzar and cisplantin he done great on chemo finished in April 2014 had a scan afterwards they thought the CA. Had shrank by 50% he they started 5 high strength doses of radiation in June and done great with them as well. He felt great through August. Then he started feeling bloated and crummy, jaundiced just feeling really bad. So called his stent dr ( he has had stents since June 2013 being changed every 2-3 months.) he thought maybe stents were clogged so brought him in early and changed them his bili was 4.8 at that time it actually did not help anything his bili was over 7 by the next week. In September they decided to do external biliary drain. He had numerous problems with this and lost 50 lbs. after many changes of tubing etc they pulled it in Nov 13. He had saw his oncologist on Nov 7who had pretty much said there isn’t anything that can be done I am leaving for 3.5 month maternity leave you need to go home with hospice she said of you ever bounce back from this which I don’t think you will you are more than welcome to see me again( he was in severe pain with the drain in was taking oxys every 4 hours and had duragesic patch)So a few days after that we decided hospice wasnt what we were ready for. Keep in mind at this visit he still had the external drain and was so very ill from it. He had a stent change December 18 and they placed metal stents saying they are permanent , but at the time they were place his bile ducts looked pretty clear and the stents had good placement. Since Nov 7 he has gained 20 lbs and has absolutely no pain! He is doing great getting his strength back. So now we are at a point that we don’t know what we need to do, we don’t know how much cancer is there. Is there any other treatment they can give him , we really just are lost because the two docs that we started this journey with has kind of washed there hands of the case?? Any help would be greatly appreciated!!! (As of right now bili is 2.9, no jaundice great appetite)

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