pcl1029

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Viewing 15 posts - 481 through 495 (of 1,667 total)
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  • pcl1029
    Member

    Hi, willow,
    Thanks for your appreciation.
    God bless.

    pcl1029
    Member

    Hi, everyone,
    I have just revised the aboveby adding a new link.
    God bless.

    pcl1029
    Member

    Hi, Gavin,
    I do not mind at all. This is what this message discussion board is for. To share both emotional support and medical information as accurately as possible.
    To day I also add the comparison of CAPOX and GEM/CIS to the above . I believe CAPOX is,as Dr. M Jalve group mentioned in the article , an alternative to the more harsh regimen of GEM/CIS,if patients have difficulty from its side effects.
    May sure to say hi to your mom for me; March comes in as a lion in the case of snowing; I have 6 inches of snow on the ground just from this morning and they forecast the biggest snow has yet to come beginning 2 hours from now till mid-night. Wow, the weather is changing and I hope Scotland will be better off.
    God bless.

    pcl1029
    Member

    Hi, everyone,

    I have just add a link to the ” Systemic chemotherapy in general for CCA patient”.
    http://www.discoverymedicine.com/Daniel-M-Geynisman/2012/07/26/toward-personalized-treatment-of-advanced-biliary-tract-cancers/
    I put this link before my presentation because it represented the most up to date discussion about CCA treatment. It is for medical professionals but most of us can at least know the trend of treating cholangiocarcinoma in reading thru the article.
    God bless.

    in reply to: All Done #69382
    pcl1029
    Member

    Hi,
    No word I can say to comfort a parent who love her son so much with such understanding and love.
    May God’s grace be with you always.
    God bless.

    in reply to: my father #69312
    pcl1029
    Member

    Hi,
    On the contrary , I will get a second opinion in China, like the best tumor hospital in Beijing ( I do not know the name), for oncology and interventional radiology consult first before coming to America.
    The reason is simple, every year in the most prestige oncologist convention here in Chicago,the ASCO convention, there were a lot Of Chinese md attending and bring home what they learned.
    Since most likely, the oncologist in China will start the same protocol they have learned in the States here in Chicago, I do not think the chemotherapy regimen is that much of a difference when it begins.
    However ,I will bring my dad here if the 1st line chemotherapy like GEM/CIS or GEMOX do not work after the first CT scan when he has the chemotherapy treatment. In that way you will get more specific info and expertise to treat your father.
    As a general rule of thumb, if the surgery went well, patient can start their adjuvant chemo six to eight week after surgery if they have no other medical problem prior to the surgery.
    So you still have time to search for the best hospital in Beijing for 2nd opinion.
    Mostly likely the best hospital are the one that are affiliate with well known university.
    One final note, do not go to the hospital that use Chinese herbal medicine as their main treatment objective. Go to the one that practice western style medicine.But it does not mean you cannot give 八珍湯 or 十全大補湯 those kind of Chinese herbal soup to your father during this no treatment period to boost his energy level to fight the side effects of the chemotherapy. Ask you mom or you to increase his protein intake by drinking soy milk豆湬 or cooking 豆腐 ,fish, walnut , chicken without the fat and skin ,Ensure, Boost are among other protein sources. He can boost his immune system by taking Oncozac , the only yunzhii extract researched in Hong Kong Chinese university that has USP approval for it purity in the States.
    After all of that, then prepare to choose which hospital for the next journey if USA is your main wish to come to. MD Anderson is famous in chemotherapy but make sure this is your father’Wish since side effect will decrease the quality of life a lot .he will know after chemotherapy treatment in your hometown or Beijing. if you want to go to HongKong for consult, e mail me at that time and I will help you found the best there.
    Can you tell me what are the tumor markers and their lab value before and after result.
    God bless,

    pcl1029
    Member

    Hi, everyone,

    The above has been revised by adding #16 to the regimen and minor update on others as well.

    God bless.

    in reply to: my father #69307
    pcl1029
    Member

    Hi,
    Fever is not common after biliary surgery.Most likely the infection is related to the surgery. In general, it require at least 14 days of antibiotics treatment like ciprofloxacin 400mg twice daily or levofloxacin 500-750mg daily for 14 days to
    eradicate the infections; If they put a stent or two in the bile duct to facilitate the bile flow, the infection may be more often. The rule of thumb is if your father has chill and the fever is >39 . Bring him to hospital right way so they can give him antibiotics or ask the doctor to prescribe levofoxacin 500mg daily ,number 14-21 tablets as standby for him to take at home when symptoms occur. In normal situation, the fever will go away in a couple days;keep your father hydrated is also important(6 glasess of 240ml liquid).
    Adjuvant therapy ,as far as I am concern , I will do it with no reservation at this time. I do not know what kind of profession you are in, but you may have done research and know that Liver is the only organ that can regenerate itself; that means as few as one cancer cell left inside the biliary system, it will regenerate together with the healthy cells in the liver of the biliary tract ; therefore I believe no matter how well the surgery turn out, due to the fact that 50-75% of cholangiocarcinoma cases may recur for the rest of our life time.( I am a patient of intrahepatic CCA) and adjuvant chemotherapy therefore is warrant to have it done.
    Adjuvant may be one of the following.
    1. Gemcitabine ,3weks on and one weeks off. (easy to tolerate)
    2. Gemcitabine + oxaliplatin. (better tolerate than gemcitabine + cisplatin.)
    3. Gemcitabine + cisplatin ( widely used as a reference standard for CC)
    4. 5FU infusional pump+ Leucovorin +oxaliplatin (good alternative to # 3)
    5. and of course gemcitabine follow by chemoradiation with capecitabine.

    For systemic chemotherapy for treatment of advance cholangiocarcinoma
    below is the link.

    http://www.cholangiocarcinoma.org/punbb/viewtopic.php?pid=57198#p57198

    By the way, may I ask where you get your treatment,in the capital of local hospital;Can you give us any names of the hospitals and doctors that help treating your father . We are an international community and some one in China,like you, may want to know that information too to help their parents or relatives. As you know liver disease is much higher than in China than in the States. your info. will help others in China as well.

    God bless

    in reply to: Fighting girl…new member! #69295
    pcl1029
    Member

    Hi,
    Base on your message, it looks like you have extrahepatic CCA (ECCA)
    For some unknown reasons, 5FU and its pill form Xeloda (capecitabine) works better on ECCA than intrahepatic CCA.(ICCA). So I think it is a good choice to switch to 5FU + other chemotherapy or targeted agents.But GEM/CIS is the regimen that most doctors refer to use in cholangiocarcinoma because of it overall response rate is one of the highest (around 22-30%).

    The rule of thumb is that if a regimen works ,doctors wiil not change it until disease progress or intolerable side effect occur.. Most of the package insert of the chemotherapy agents will have that in the “Indication” section.
    Therefore your doctor was not wrong to wait until the tumor started not to respond to the GEM/CIS regimen and switch to 5FU. The only way to know whether the regimen is working is a CT scan after the chemotherapy was given a period of time or more. No one and I do not think you want someone to anticipate your disease progress and give you something else without an evidenced-base diagnostic result- Unlike antibiotics, which they give you an empirical antibiotics first in ER and finally give the appropriate antibiotics when the blood culture is done and give the doctor or pharmacist the bugs that they know which antibiotics and frequency they should used for your infection. You do not want them to give you chemotherapy to try on you. chemotherapy agents are much toxic than antibiotics and other medications.
    When the disease did not response the current chemotherapy, that means the cancer cells had developed a mechanism to resist the effectiveness of the chemotherapy agents that are in use and it make no sense to continue the same thing if it is not working.that is why the drug company advice for most of the chemotherapy agents in the package insert, continue until disease progress,that means until the regimen no longer works.

    I am not a doctor but only an old patient of ICCA for 45 months now. I am a medical professional also. My opinion may be wrong but that is the choice you have to make when you try to gather info. from the internet.

    Princess Margaret Hospital is one of the best research hospital in Canada for cholangiocarcinoma. I took my Dad there several years ago for treatment of lung cancer and I know how it feels about the personal who works there, You may see an oncologist with residents doctors; the waiting area are small and full of a lot of cancer patients that do not know what comes ahead in their lives; you need to go to a different floor to get register for lab work and other things and there are a long line ahead of you. The nurses are over work and under paid and take care of several patients at the same time and there are training goes on for nursing as well as in other medical fields.So please be kind and forgive their choice of words,they wants to do good,but they may not have the capacity of keen sensitivity like you have-can read body language and among other things. There are not many medical professionals born with the gift of comforting the sick and satisfying the needy patients .It takes time and emotional maturity to develop such skill .
    You have come to the right place to get emotional support from all our moderators as well as seasonal caregivers and patients; they will provide you the vast emotional support to boost your fight spirit, to encourage you when needed; to comfort you when sensed; and above all provide you a place to vent.
    This site is very different than some other sites that is only operated by one person and have nothing to enrich our live toward understanding medically and emotionally about cholangiocarcinoma.
    God bless.

    in reply to: Caregiver’s Bill of Rights #69172
    pcl1029
    Member

    Hi,
    In general, most people can tolerate the folfox quite well without problems; the pre-medications such as dexamethasone,zofran or other anti-emetic will help the nausea and vomiting. Of course, he will feel tired and have” hand and foot syndrome ” and difficulty to handle cool objects such as a glass of cold water. For specific adverse drug reaction please check the link below .

    http://www.cholangiocarcinoma.org/punbb/viewtopic.php?pid=57198#p57198

    God bless.

    in reply to: reading my pet scan help???? #69231
    pcl1029
    Member

    Hi,

    What did the report say about the liver?
    Is only your liver involved in the tumor growth ?
    Is that why statement 2 you mentioned no mets of abdomen?
    God bless.

    in reply to: Caregiver’s Bill of Rights #69167
    pcl1029
    Member

    Hi,
    the one you take home should be the 5FU pump infusion for 46hours.
    but what is the name of the drug that your husband had while in the cancer center .Was it oxaliplatin or irinotecan?
    God bless.

    in reply to: Pain?? #69215
    pcl1029
    Member

    Hi,
    Lying down will help. Most pain are dull and not sharp pain except in the end stage of the disease. I am a patient for 45 month.(ICCA), occasionally I had dull pain after 8 hours’ work;but when I am home, I just lying down in bed and the pain will go away.
    Pain is not common for intrahepatic CCA (ICCA). even in the size you mention.
    Of course if it press against one of the nerve around an organ(,ie; the bone) then it is a different story.
    there are a lot of other treatments for ICCa,depending on location RFA,TACE, nanoknife IBRT and radioembolization are related to radiational treatment; a lot of other systemic chemotherapy and targeted agents can also be used for this disease.; and of course liver resection after neoadjuvant chemotherapy .
    The hope is alive and the dream of being cure will come true someday.
    God bless.

    in reply to: New member #69187
    pcl1029
    Member

    Hi,

    I have not stopped researching this disease but in every situation there were symptoms on the onset..
    For intrahepatic cholangiocarcinoma, there are no symptoms even in the final stages of the game. The reason, the liver a very large organ, and if the tumors do not block the bile flow, your will not see any symptoms until the bile ducts are blocked or the liver no longer can function under the minimal capacity because of the tumor load is too heavy .
    BTW, since I have this disease, I did not hide my situation when asked ; I told my classmates and my coworkers; I join this message board and contribute my share of what I think is my responsibility to find the cure of this disease. Actually I am more active than I had my disease before.
    One thing I am sure, I did help a few of my classmates and coworkers who develop cancer later , in understanding that the ” positive attitude “that I demonstrated at work and thru communications give them courage to fight against their own battle of cancer.and I thank God for using me to help others thinks differently and positively about treating the disease called cancer.
    God bless.

    in reply to: New member #69184
    pcl1029
    Member

    Hi,
    I will recommend Mass General Hospital for a overall 2nd opinion on intrahepatic cholangiocarcinoma(ICCA). They use a team approach and is forefront in CCA treatment and research.They will provide info for your husband on surgery,medical oncology,interventional radiation and biomarker collection.
    do this as soon as possible so you and your husband know exactly what your husband current disease state and move from that point on.
    I am a patient of ICCA for 45 months; Cancer is now more or less like a chronic diesase like diabetes or high blood pressure. Cancer is no longer a disease of unknown anymore. and it seems your husband discovers his ICCA quite early so, get a 2nd opinion from MGH first and then goes from that point on. In the meantime ,educate youself by reading message from this board.
    1. about systemic chemotherapy and targeted therapy in treating CCA.

    http://www.cholangiocarcinoma.org/punbb/viewtopic.php?pid=57198#p57198

    2. about clinical trials for this disease.

    http://www.cholangiocarcinoma.org/punbb/viewtopic.php?pid=70706#p70706
    God bless.

Viewing 15 posts - 481 through 495 (of 1,667 total)