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  • #50567
    pcl1029
    Member

    Hi,rodo,
    This information is related to your father’s treatment.
    BTW,how is your father doing? Is there any complete or partial response to the treatment?Can he has the option to have resection or other like TACE as the following abstract indicated? please keep us inform and help others as well.
    God bless.
    #6 This is of special interest to patients who is now under or consider treatment under Dr. Bruckner,oncologist who practices in down town New York using “chemo cocktails” to treat CC patients.
    In his “multidisciplinary effect of adding docetaxel and mitomycin C to low dose multidrug therapy for cholangiocarcinoma”He states he uses gemcitabine, 5FU irinotecan,leucovorin,oxaliplatin(GFLIOx) and GFLIOx+docetaxel,mitomycin C (GFLIOx-TXT+/-MMC) to treat high risk CC patients who are unresectable and recurrent. Analysis excluded ideal patients with either tumor<5cm or well differentiated primary tumors.GFLIOx produced a 50% rate of benefit for 6 months or more and 19.5 months median overall survival. In sequence,on progression addition of both TXT and MMC produced a 90% rate of benefit,all for six mohths or more and a median survival of 10 months from time of first addition. All this benefits provide opportunities for resection,debulking surgery,TACE and Yittium 90. The findings support testing these low dose combinations in both neoadjuvant and classic adjuvant settings.It is feasible to produce opportunities and multi-year,treatment-free survivors with "palliative" low dose treatments for recurrent and unresectable disease.Secondary benefits include reduced cost and adverse events,compared to high dose standard therapy.Final review will presented in J.Clinical Oncology in 2011. #e14546.

    #50566
    pcl1029
    Member

    Hi,rodo,
    Thanks for your compliment.
    You may not believe my answer that I will give to you.
    But yes ,I am a patient (ICC) stage II.
    and yes,I am in a way also a caregiver to my sister-in-law who has stage IV ECC.
    and yes I am also a healthcare professional working in a hospital setting in U.S.
    what a small world that life is?
    God bless.

    #50565
    rodo
    Member

    Thanks Marion!

    PCL1029
    i’ll check if I can get you all the info. My mom is the one who usually goes to the chemos with him. I’m living in PR but i will try to get as much details as I can. Are you a Healthcare profesional, patient, or caregiver? You semm to know a lot!!!

    #50564
    marions
    Moderator

    rodo…..thank you for sharing this information. Unless your Dad specifically requested his medical information not to be disclosed I don’t understand why the physicians don’t release the info to you re: the stage of his cancer. Prognosis is another thing. Although, this disease is difficult to treat and the response to treatments vary from person to person I believe that it is best to focus on the response to treatment. There are some great sayings on this board: “We don’t have an expiration stamp on our butt” and “We try to stay realistic and optimistic.”
    Gathering another professional opinion still might be something to consider.
    All my best wishes,
    Marion

    #50563
    rodo
    Member

    Hello everyone!! Thak you for all your comments. I like sincere people!!!! I’m back with the chemo information you requested. I think there are some drugs missing in my list but just for you to know:
    Gemzar
    Leucovorin
    Irinotecan
    Oxaliplatin
    Mitomycin
    Vitomycin
    Eloxatin
    As part of the treatment, my dad has to take a japanese pill made of Coriolus Versicolor fungus also known as Turkey Tail.
    Of course, the ammount of each medicine used is unknown by us. Every time Dad goes to the chemo, after the blood tests, the Doctor adjust the “cocktail” as needed. One thing I’ve notice is that they don’t give me the stage of the CC neither a prognosis. Is that ok? It is very difficult when you don’t know where you’re going or what to expect.

    #50562
    rodo
    Member

    I will get the details of the chemotherapy during this week. I left the papers at my dad’s house in another city. As soon as I get it I’ll post it.

    #50561
    pcl1029
    Member

    Hi,
    If I may suggest-
    If the liver lesion is 6.5cm after neoadjuvant chemo like your father had;liver resection can be performed if not contraindicated due to location of the lesion or other metastasis;Radiation like PDT,EBRT,SBRT are choices too; if your father’s CC is ductal ;5FU or gemcitabine chemotherapy are options.
    If you can find out what are the drugs in your father’s “chemo cocktails”,
    It may be of interest and benefit to the CC patients here.I personally appreciated if you can do that for this web site.
    Ask the doctor to prescribe anti-depressants if you dad wants them- like Prozac,Paxil ,Remeron,etc.
    One of the POSITIVE side effect of anti-pressants,esp. the newer ones like Remeron is gaining weight.
    CC is a long and winding road and require knowledge and courage to due with it.
    Your dad is the lucky few to be in the ” partial response” category to his CC.
    But will not be out of the wood completely soon. You will be with him on his CC journey for quite sometime to come. and he will definitely need your help in prolonging his life or cure his CC. And please forgive me to be so frank in suggestion
    God bless

    #50560
    gavin
    Moderator

    Hi Rodo,

    Welcome to the site. Sorry that you had to find us all and I am sorry to hear about your dad also. But I am glad that you have joined us all as you will get a load of support from all of us. So please feel free to ask any questions that you have and we will all do what we can to help in answering them.

    Your dad sure has been through a lot and especially so with having to relocate to NY to seek treatment. But that is great news indeed about his shrinkage following his chemo treatment and also good to hear about the no metastasis. My dad too was prescribed anti-depressants after he started his PDT treatment and he was on prozac. From what you have told us it sounds like you are doing everything possible for your dad here and please do not give up hope. We know what you and your dad are going through and we care, so please keep coming back here and keep us updated on everything.

    My best wishes to you and your dad,

    Gavin

    #50559
    marions
    Moderator

    rodo….this sounds so very encouraging. Which chemotherapy is your Dad responding to so well?
    All my best wishes,
    Marion

    #50558
    rodo
    Member

    Thank You very much! Marion: the primary is inside the bilial ducts and there are no more metastases than two lesions in th liver. He’s been scanned twice (PET scans) and no evidence of other metastases. Thanks God!

    #50557
    lainy
    Spectator

    Hello Rodo and welcome to our wonderful family. I am sorry to hear what your
    Dad is going through. It is good to know that the tumor has shrunk. We love shrinkage. My feeling is that you are doing all the right things and attitude plays such a big part. Perhaps he just needs a mild anti depressant. We like to say that we try to remain realistically optimistic. Your dad should know that we have members who were given months to live and have beaten the odds. We see miracles happen all the time and cannot stop believing. I truly hope that your Dad continues to fight the good fight and wish you all the best. Please keep us posted.

    #50556
    marions
    Moderator

    Hello Rodo…..Of course, stay hopeful and encourage your Dad to do the same. The current shrinkage is quite remarkable and my hope is for the trend to continue. You also might want to consider making an appointment with a radiology oncologist in order to see if radiation also might be of help. That is of course, if the location of the tumor does not prohibit radiation treatments.
    Depression often times accompanies cancer patients and we have seen it, on our site, often and many have been prescribed anti-depressants. Having said that I do like to point out that ultimately it should be the patient making the decisions re: continuing treatments. And, it is of real importance that the family stands behind that decision. Where is the primary tumor and are there other metastases? You might want to have a frank discussion with the treating physician. Make sure to take notes because, much information will be coming your way. Based on that discussion you will be able to help your Dad make informed decisions. That in itself will give your Dad some hope.
    I am glad that you have found us and I am sure for others to share their thoughts with you also.
    All my best wishes,
    Marion

    #5194
    rodo
    Member

    Hi! I am Rodo, from San Juan, Puerto Rico. My dad has been diagnosed with CC last August. He has methastasis to the liver and is currently under treatment. The doctor said that the tumor in his liver is too big to be removed and our only choice was to start chemotherapy to slow down the spreading of the cancer… Looking for options, I contacted Dr. Marion Schwartz in Mount Sinai Hospital, NY hoping for liver transplant as a solution for our situation. Last november we went to the appointment and after looking our records (Ct, biopsy, etc), he told us that transplant was not an option. He offered to refer us to who he considered “the best ochologist in Manhattan” whose “chemical cocktails” help a lot of hard cases. That’s how we end up at New York Downtown Hospital in Bruckner Oncolgy Clinic. I find him a place to live, and move him and my mom to Manhattan where they have been during the last 7 months. Things have been hard for everyone!! Specially during winter… but the worse is my father’s attitude. He has no hope!!! At the beginning the tumor kept growing from 10 cms (when diagnosed) to 12cms (January). On February I brought him to PR for a few days between chemos to recharge energy. When he went back, he was rescanned and the tumor shrunk to 6.5 cms!!!!! We all were so happy!!!! But he wants a fast solution!!! I am being too optimist about this fight? Should I stop encouraging him to fight against CC?

Viewing 13 posts - 1 through 13 (of 13 total)
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