Off to Germany for treatment

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  • #45665
    marions
    Moderator

    ghannam80…..welcome to our site. I suppose you had forwarded all medical records to cancer centers in Europe. Had you mailed the actual scan disk in addition to the physician reports to other cancer centers? What chemo regimen has been recommended?
    Additionally, in your country what does palliative care entail? I am not a doctor, but a previous caretaker and I advocate for those touched by this disease. Therefore, I would like to mention that progression of Hilar Cholangiocarcinoma is driven by the obstruction, hence, some physicians may prefer to perform bypass surgery. You might want to ask about this. Hyperthermia for cancer treatment has not been reported often on this site therefore, information might be sparse. I did however; pull up these links:
    http://www.cholangiocarcinoma.org/punbb/viewtopic.php?id=4337
    http://www.cholangiocarcinoma.org/punbb/viewtopic.php?id=273
    http://www.cholangiocarcinoma.org/punbb/viewtopic.php?id=2579
    http://www.cholangiocarcinoma.org/punbb/viewtopic.php?id=253&p=2

    http://www.cancer.gov/cancertopics/factsheet/Therapy/hyperthermia

    Please keep us informed – we care.
    Hugs,
    Marion

    #45664
    pcl1029
    Member

    Hi,
    Replacing “Plastic” stents every 2 months is not uncommon here in the States .
    Metal stents may last between 6-18 months in general.

    In your mom’s case,systemic chemotherapy like Gemzar+cisplatium or 5FU+ cisplatium will be a start because the tumor involves both the right and left hepatic artery and the main portal vein. In addition, there are nodal spread to the celiac axis and the aortocaval nodes. ; GEMOX or FOLFOX may be a better choice if the kidney function is of concern. it will be all up to the oncologist to decide after the lab work are done prior to chemotherapy each time.
    Sometimes the chemotherapy will shrink the tumors enough to allow more choices of treatment down the road.
    59 years old is young and should be treated aggressively if no other health problems involved. But it is all up to your mom to decide since this disease is difficult to treat and the ups and downs like a roller-coaster is not for everyone easy to accept both emotionally and physically.
    There is currently no effective treatment for this cancer except may be surgery,but as you can see, it is a relatively comparison only. i had recurrence and have surgery twice ;but it still come back for the third time.
    Keep up your knowledge on this cancer is a good idea to allow you to know what other options you can have.
    God bless.

    #45663
    darla
    Participant

    ghannam80,

    You may not have noticed, but this discussion was posted several years ago. You may want to repost this in the introductions section as I think it will get more attention and more responses.

    Other than to get more opinions which it looks like you are already doing, I don’t have any suggests at this time, but want to welcome you to this wonder family of caring people who will try to help in any way that they can.

    Glad you have joined us, but sorry you had to. Hoping for the best for your mom and that you can get some answers and some help for her.

    Darla

    #45662
    ghannam80
    Member

    My mother did not enter the hospital at all until she got yellow skin and itching just before 6 weeks , we thought it had to do with gallbladder initially as ultrasound showed gallstones but later the MRI showed the cancer and the result below :

    It is not an operable Klatskin’s tumor. It is a Stage IVa (T4N1) tumor by TNM staging. It is not operable as the tumour involves both the right and left hepatic artery and the main portal vein. In addition, there are nodal spread to the celiac axis and the aortocaval nodes.

    The patient is best served by metallic stenting of both the right and left hepatic ducts. Subsequently, palliative chemotherapy can be considered as the patient is about 59 years of age.

    since then I am consulting all cancer centers worldwide I can reach and non of traditional ones offer more than placing stents which is already done and replaced after one month because it was blocked.

    Any ideas or thoughts would be highly appreciated.

    #45661
    pcl1029
    Member

    Hi,
    Will you tell me how old is your mom? ,any other health problems? How did she find out she had cholangiocarcinoma (CCA)? By accident or because of pain etc?
    Is the tumor inside the liver only,or both inside the liver and the bile duct, or the tumor is only in or alongside the main common bile duct?
    How big is the tumor and any lymph node or metastasized to other organs?
    Ca19-9 result; bilirubin =?; has any stent put in for bile obstruction?
    It makes a difference in treating the cancer.
    Who told you you have no other option? Is the oncologist ,or the radiologist or the liver surgeon ? Or all said no option?
    I am a patient of this disease for 53months and I believe every patient deserve his or her chance to live . I make 2nd and/or 3rd consult on surgery,radiation and oncology and compare my options.
    I do not think hyperthermia is the proper and only treatment for CCA.and if you notice this message link was almost THREE YEARS old.
    So this can tell you something about hyperthermia whether still a popular
    treatment or not.

    One exception, if you use local interstitial hyperthermia such as RFA or microwave ablation for the liver, if the location and sizes of the tumor allowed , it can achieved good outcomes., but in general, I do not think that is what you mean when you use the term hyperthermia .
    What type of hyperthermia you are talking about? it may give me a better picture to answer your current and future question.
    God bless.

    #45660
    ghannam80
    Member

    My mom is recently diagnosed with stage IV so I was considering this option as we have no other choice , any feedback about the hyperthemia ??

    #45659
    jamie-d
    Member

    Hans thanks for the update. You are both in my thoughts and prayers.
    Jamie

    #45658
    hollandg
    Member

    Thanks Hans
    Good luck in Germany……………………..Gerry

    #45657
    gavin
    Moderator

    Thank you for the update on Kris Hans, please pass on my best wishes to her. Loads of positive thoughts coming over yours and Kris’s way.

    Gavin

    #45656
    lisa
    Member

    Thanks for the update, Hans. Prayers for successful treatment coming your way. Kris is such a warrior!

    #45655
    darla
    Participant

    Hans,

    Thanks for updating us on what is going on with Kris. I am thinking of you both and hope things go as planned.

    Lots of Love & Hugs for Both of You,
    Darla

    #45654

    Thanks for the update, Hans. So glad to hear that you and Kris have arrived safely and that things are beginning. Please give my love and lots of positive thoughts to Kris …

    Helen xx

    #45653
    nur1954
    Member

    Give my love to Kris….and hugs to you too, Hans. We love you both – Nancy

    #45652
    monkeybutt
    Member

    So we’ve arrived at “Fachklinik Dr Herzog”! It seems a bit strange, but we’re starting to find our way around it

    The train ride and flight went well. Kris threw up three times on the train, but very discreetly, like the Southern Belle she is. Other than that it wwas tiering but uneventful, dispite bad weather.

    The hospital is a strange mix of a country side hotel (not unlike Fawlty Towers) and hospital. All beige and terracotta colours and tacky decoration, and is as badly organized as Frankfurt Airport… Everyone is very helpfull, but no one gives you any information, and there is much confusion. The hospital seems to have been built in the 60s, but with so narrow passages and so many different levels, stairs, ramps etc that it must have been something else originally. The village is tiny, but private medicine is evidently its main industry, with three private hospitals and a number of smaller doctors offices.

    But we’ve had blood drawn, had an ultra sound and some infusions, and the first local hyperthermia treatment – without any chemo until blood work is back (also some magnetic therapy, which we are less enthused about, as it seems complete mumbo jumbo). And we’ve seen Prof. Doktor Med. Herzog who turns out to be a tall, lean, serious but kindly man with silver hair worn long hippie style, who seemed rather amused that we had brought our own wheight in medicins (as we had been missinformed that we would be billed separately for medicine, which turns out not to be the case).

    Kris is doing pretty well, but she is quite week and she was sick a lot today. We are worried about the amount of blood in the vomit and drain. If her blood values go down it could scuttle the chemo plans…

    #45651
    mlepp0416
    Member

    Kris:

    Best of luck to you and the worst of luck to ‘Leroy’ and I certainly hope this treatment knocks him on his A**! Tell Hans that Leroy has to GO NOW!

    Hugs,
    Margaret

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