opinions?

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  • #88969
    el3raima
    Member

    Hope_12,

    I hope all is well with your dad.

    My father is going through the same thing as your dad and he is getting treatment in king fahad medical city. He was diagnosed last year (2015) around March.

    I have been looking for overseas options

    I am very interested on knowing what did you end up doing with your father case? Any information is appreciated.

    #88968
    gavin
    Moderator

    Thank you Hope!

    #88967
    hope_12
    Member

    thank you all for your help , I really appreciate what you’re doing and your suggestions are helping .
    and sure Gavin , already did !

    #88966
    gavin
    Moderator

    Hi Hope,

    Welcome to the site. Sorry that you had to find us all here and sorry also to hear about your dad. But I am glad that you have joined us here as both you and your dad will get loads of support and help from everyone on the site. Thanks as well for sharing everything that is happening with your dad. My dad also had CC so I so know what you are going through right now.

    I am very glad to hear that you are seeking further opinions and options for your dad with regards to treatment options and I so wish both you and your dad every success with this. I will leave recommendations to treatment facilities etc to those from the USA.

    Please do not give up hope here about everything. Can I ask you as well if possible, could you please copy and paste your post here on this part of the site as well?

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

    The reason that I ask is that we are trying to create as much information regarding treatment facilities around the world from where our members or their loved ones have or are being treated as this information is of great use to so many people worldwide.

    And please keep on coming back here and keep us updated on everything. We are here for you.

    My best wishes to you and your dad,

    Gavin

    #88965
    marions
    Moderator

    hope…..Has molecular testing been discussed for possible match with an available immunotherapy agent? It will involve a biopsy for tissue sample.
    The physician needs to sign a task requisition form.
    Instructions can be found in this link:
    http://foundationone.com/order.php#1

    http://foundationone.com/docs/Foundatio … =196914911

    A sample with pathology report needs to be sent to:
    Foundation One
    150 Second Street
    Cambridge, Mass. 02140
    USA

    For a more detailed overview: http://foundationone.com/order.php#1

    You may call or e-mail for further instructions:
    Client.services@foundationmedicine.com

    This link offers an overview of Immunotherapy:
    http://www.cancer.net/navigating-cancer-care/how-cancer-treated/immunotherapy-and-vaccines/understanding-immunotherapy
    All my best wishes,
    Marion

    #88964
    middlesister1
    Moderator

    Dear Hope,

    I’m sorry to read of your father’s fight with CC.

    It is good that you reached out for second (and even third opinions) from some of the best treatment centers around. I understand your worry on having Dad take the long trip without at least an indication that it will not just be to hear in person that there is nothing they could do.

    I know with my Mom the doctors always approached chem from a point of looking at could it do more harm or good. This is a very tough cancer and the although the treatment options are improving, there is still so much more that needs to be done. Some of the new drugs are showing promise, but it’s moving too slowly for those who have this disease now.

    I’m not a doctor or a patient, so I hope others will chime in. I would not put my parent through the long trip without at least an indication that they had a plan.

    I hope some who are being treated at Cleveland can chime in.

    Best wishes,
    Catherine

    #88963
    lainy
    Spectator

    Dear HOPE, your name says it all! Got to keep hoping or like I say must remain optimistically realistic! We have had members who were Diagnosed at Stage IV with no hope for surgery and then the right team of Doctors got the tumor reduced in size enough to have surgery. If you feel like the Doctors are giving up ASK them and see if you can switch to another team. 2nd and 3rd opinions are very important! Below is a site you may find helpful and please keep us updated on your Father’s progress. Be very strong!

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

    #11491
    hope_12
    Member

    Hello everyone , I’m so glad that I found this site it has helped me a lot reading what you have been through .

    my dad was diagnosed with intrahepatic cholangiocarcinoma in august 2014, he is 53 he had scans after weight loss that made the doctor suspicious, then a liver biopsy of the mass .

    he was not a candidate for surgery because the largest tumour size was in his left lobe of around 16 cms ( 6 inches ), and involvement of all other lobes of the liver with smaller lesions , his performance status was excellent so he was started on gemzar/cisplatin in his local hospital in saudi arabia which is the biggest and leading one in the middle east , king faisal specialist hospital and research centre , he received 6 cycles.

    he had I would say remarkable improvement his weight started to come back to base line his ca 19-9 back to almost normal figures as well as .
    his scans showed regression of that lesion to 6 cm from 16 cm (2.3 inches from 6.2)
    he still had the smaller lesions in other lobes of liver and still wasn’t a resection candidate .

    he wanted to be treated beside his family although I have prepared for him to be seen in experienced big centres like mayoclinic but his wish was that if they didn’t have anything significant to offer then I’d rather stay home, which was the case based on their replies ( mayoclinic, memorial sloan catering)
    I also looked the option of liver transplant which he wasn’t a candidate because his tumour size is large and that it is intrahepatic and also involvement of local lymph nodes and compression on liver vessels .

    after 4 months of chemo he had radiological progression and started on second line xeloda(capecitabine) and oxaliplatin , how ever it progressed regardless and exploded in like 2 months where it has not only come back to previous size but even worse and mets to the lungs .
    he had received 5 cycles of his second line and the oncology team stopped it and decided for no further chemo .
    he was clinically jaundiced and after ERCP and placement of plastic stent better and bilirubin started to come down .

    he has an appointment scheduled in Cleveland clinic , how ever it is a long flight and I couldn’t speak to anyone there to have like a preliminary plan and I don’t want him going there in this condition without any benefit , like getting into a trial or something .

    I also discussed with doctors local therapies to the tumour like TACE and RFA .. how ever they said it would do more harm than good at this stage .

    I feel so sad and also think always like did they give up easy or is this the nature of this cancer .so what do you guys think ? any similar experience .

    thank you guys so much again, this helps a lot

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