pcl1029

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  • in reply to: Just of Concern About the Ways to Find Treatment. #76474
    pcl1029
    Member

    Hi, everyone,

    The link below shows part of the reason for all of us,the patients,”try to hang around for as long as possible so to be benefited from the fruits of the new era of cancer research.”

    http://www.ndtv.com/article/world/breaking-through-cancer-s-shield-432482

    God bless.

    in reply to: A new age of cancer classification and treatment #76561
    pcl1029
    Member

    Hi, Gavin,
    it is an easy to understand version of the trend in the treatment of cancers now and for the future. Well done.
    Make sure to say hi to your mom for me, and how’s your newly decorated Scottish villa ? It must be good .
    Well, the weather now in this BEARS country is cool and wet today with a chance of frost tonite; the same can be apply to the BEARS this coming Sunday if the Steelers wakes up and put a strong defense again the BEARS’s fragile offense.

    God bless.

    in reply to: Just of Concern About the Ways to Find Treatment. #76473
    pcl1029
    Member

    Hi, Lisa,

    Thanks for your compliment.
    You know I have no choice, I am a patient too and I know how lost I was when I tried to find answers for this awful disease 54 months ago. I found nothing medically speaking that was really telling me what to do,step by step, who to see next and how to handle this roller coaster CCA. But thanks to this foundation and all of you who are medically interested in this disease, I try to be involved with this disease as much as I can, knowing that the chance of getting a cure or a better tolerated treatment is much closer than 54 months ago. The goal for me as well as for you and others is that ,” try to hang around as long as possible so we can be all benefited from the success of the current research clinical trials. “
    God bless.

    in reply to: Options for clogged stents #76530
    pcl1029
    Member

    Hi,

    This may help a little bit,( from one of the journal article that I read).

    “the latter( metal stent) are recommended in unresectable patients with malignant common bile duct strictures (median survival of 4.5 months), while plastic stents are preferred in one-third of patients who have distant metastases.23 When blocked, stents can be unclogged by dragging an extraction balloon through their obstructed lumen, by brachytherapy or by diathermic devices. Alternatively, a standard polyethylene stent or an additional metal expandable stent can be inserted through the blocked endoprosthesis. However, it is important to note that duodenal perforation and acute bleeding have been reported as a result of erosion of the duodenal wall caused by metal stents.24”

    Also this link may be of help,

    http://www.cholangiocarcinoma.org/punbb/viewtopic.php?id=10458

    The below link may help in an indirectly way.

    http://www.cholangiocarcinoma.org/punbb/viewtopic.php?id=7208

    God bless.

    pcl1029
    Member

    Hi,
    Just for clarification purpose only:
    I do think it matters if you know what pathway inhibition is the best to start for treating the CCA that a patient has, especially if drug resistance will be developed down the road which are quite common for TKI . Besides the adverse drug reactions are different( ie: some are more prone to the cardiac toxicity and others are prone to the GI toxicity.) ,Also, it does make a difference if patient has comobidities ( patient has other health problems,like a cardiac patient or a diabetic patient.)

    My point is to encourage patients ,when if they can, follow the top hospitals practices to obtain a ” next generation sequencing genomic profile” for them to map out the best personalized treatment plans for them now or in the future planning of recurrence. ( This is my own conclusion after oncology consult with three oncologists whose names are very familiar with our members on this discussion board.)
    In my opinion, not all the oncologists ( esp The community or locally practices ones )are familiar with most of this new types TKI or immunotherapy agents( IA) that came out of the market in the last couple years, therefore ,without experience or 2nd opinion to support the “off label use” of this new TKI or IA, I do not think it is that easy to ask them for a prescription and I don’t think it is appropriate for them to do so either.
    God bless.

    pcl1029
    Member

    Hi, everyone,
    For your information only.

    BTW, cabozanitinib (XL184) is a c-MET and VEGRF2 inhibitor;simply put it is a
    multi-tyrokinase inhibitor (multi-TKI) of tumor growth,metastasis and angiogenesis. (single agent treatment)

    It is different than the MEK/panopanib clinical trail,that one of our member is on, that trametinib is a MEK inhibitor and pazopanib is a VEGF inhibitor. (regimen consist of 2 agents)

    LY2801653,which one of our member is on is used as a MET inhibitor among others. (single agent)

    http://www.ncbi.nlm.nih.gov/pubmed/23275061

    God bless.

    pcl1029
    Member

    Hi, everyone,

    http://www.ejcancer.com/article/S0959-8049(13)00543-1/abstract

    The above talks about PD-1 and PD-L1 if interested.

    God bless.

    in reply to: On the whole, I’ve had better weeks #76351
    pcl1029
    Member

    Hi,
    For more personalized treatment options in the future, please ask if they ( the medical oncology) can use your tumor tissue to get a ‘” next-generation gene sequence” done for you for future specific treatment plans .
    This was recommended to me by 2 medical oncologists, and it seems to be the trend for the top institutions which are in the forefront of treating cancers.
    I am a patient of ICCA for 54 months since Dx.
    God bless,

    in reply to: Recently Diagnosed #76336
    pcl1029
    Member

    Hi, BJ,
    If I may, since you are in NJ, try to get a second generation gene sequence done thru Mass General Hospital GI oncology.
    This requires tissue sample from the tumor ,so one way to get it is biopsy.
    This “gene sequence ” will provide you a road map for ” more specific” future treatment options.
    It was recommended to me by 2 medical oncology consults.
    I am a patient of this ICCA disease for 54 months since diagnosis.
    God bless.

    in reply to: New to Group #76269
    pcl1029
    Member

    Hi,
    If your wife has the CCA originated from outside of the liver or around the areas where the common bile duct meets the liver, try to read ,Eli,one of our member’s messages about his wife’s journey.
    If your wife’s CCA originated from inside of the liver, you can read ” Percy’s history ” .
    God bless.

    in reply to: Just for interest… #76011
    pcl1029
    Member

    Hi,
    The theory and principle of using traditional Chinese medicine (TCM) practitioner to treat patient is the balance of (Yin and yen) or ( cold and hot ) of the entire body . And that is why Chinese herbal medicine is complex and require experience TCM practitioner(TCMP) for diagnosis and treatment.
    I do not believe TCM is a holistic approach . There are a lot of info on the web about holistic medicine and TCM practice people can find out their difference .
    Different cultures have their different traditional medicinal formulas to treat various illness and proven to be useful too.
    EU pharmacopoeia is similar to the USP( USA pharmacopeia ); if you look closely, the standard is for Medicine & the raw materials to compound the medicine only. And not for food like all the herbals plants, seeds leaf that you can buy in a grocery store, at least it is in the States herbal medicines are classified as food and nothing else.
    The purpose of this long discussion is not for myself but for those who would come later to explore this topic again , like you in the future.
    Thanks for the discussion and I will stop here with regard to this subject matter.

    God bless

    in reply to: Just for interest… #76009
    pcl1029
    Member

    Hi,
    I think we may have a misunderstanding between herbs and ” Chinese herbal medicine” practice or the Eastern style of herbal medicine practice in the Far East including Japan’ Kampo practice ,South Korea,Taiwan and down to Singapore. “Chinese Herbal Medicine ” is a generic name refers to the practice itself. The herbal medicines usually contain barks of plants,stones of different metals ,skins and body parts of animals,leaf and seeds,fruits depending on different regions ,climate and time of harvest.
    I can only say one thing, lisence or law will not ensure you will get the real thing from some Far East suppliers, there are a lot of look a likes out there.But if you can grow them,then it is a different story.
    God bless.

    in reply to: New to the Group #76103
    pcl1029
    Member

    Hi,
    May be you should ask a multidisciplinary tumor board for a complete evaluation of your situation.
    Dr. Catenacci is the GI oncologist you should start with.

    Daniel Catenacci, MD
    Assistant Professor of Medicine
    University of Chicago
    900 E 57th Street Suite 7128
    Chicago, IL, 60637
    Phone: 773 702 7596
    Fax: 773 702 9268

    God bless.

    in reply to: Just for interest… #76006
    pcl1029
    Member

    Hi, Susanne,

    I am glad that you like to use Chinese herbal medicine ; the following link may help you if you are interesting to use herbal medicine for CCA.

    http://www.cholangiocarcinoma.org/punbb/viewtopic.php?pid=44200#p44200

    Also, due to the research and development of new method to deliver the most common Chinese Herbal medicine in the last 10 years , manufacturer most of them using western methods transform most herbal roots and plants,seeds and leaf into medicine granules formulation and dispense as such in most Hong Kong hospitals and pharmacy that prescribe Chinese Herbal medicine, the reason is simple to use, standardization and quality control. And that will be the trend for the future.
    Here is the link below

    http://www.cholangiocarcinoma.org/punbb/viewtopic.php?pid=64172#p64172

    God bless.

    in reply to: Wife diagnosed with Intrahepatic Cholangiocarcinoma stage IVb #76031
    pcl1029
    Member

    Hi, Lisa,
    Here is the link about the ABC TRAIL indicated it may be effective for treating cholangiocarcinoma.
    The final result will be available hopefully at ASCO 2014 at Chicago.

    http://www.cholangiocarcinoma.org/punbb/viewtopic.php?pid=77470#p77470

    If you would like to know about other chemotherapy regimen the link below May help.

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

    Also the link below for interventional radiology treatment options for CCA if patient qualified.

    http://www.sirweb.org/patients/liver-cancer/

    God bless

Viewing 15 posts - 181 through 195 (of 1,667 total)