Search Results for 'chemoradiation after adjuvant'

Discussion Board Forums Search Search Results for 'chemoradiation after adjuvant'

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  • #96645
    gavin
    Moderator

    Hi Li,

    Welcome to the site. Sorry that you had to find us all here and I am sorry also to hear about your dad. But I’m glad that you joined in with us all here as you will get a ton of support from everyone here. From what you say about your dad and his treatment, it sounds like he has been through a lot of treatment and it is great to hear that he was able to have the surgery as unfortunately many people are not candidates for that.

    I know that you are confused about things, that is common and something that we all go through at times. No wonder I guess as none of us are doctors or anything are we! I wish that I could help in answer your question for you but I am not a doctor and can not give specific medical advice. I do have some links for you though and hopefully they will be of interest and use to you.

    We have a list of major treatment centres in the USA and it can be found here –

    https://cholangiocarcinoma.org/for-patients/major-cancer-centers/

    We also have a list of treatment centres that was created by the members here on the site where either they or their loved ones have been treated and hopefully you will find some info there about facilities in Chicago. It can be found here –

    Treatment Centers/Physicians

    And, the search forum function at the site of the page will help throw up any discussions and links here on the site as Mary has suggested to you. Just type in what you want to look for and it should throw up what is on the site. I did a quick search and it came up with this –

    https://cholangiocarcinoma.org/db/search/chemoradiation+after+adjuvant/

    But you can have a more detailed look if you want to. Off the top of my head, I think that a few people have went through these treatments and hopefully the search forum will throw up their experiences for you.

    I hope that you will keep coming back here and please let us know how things go for your dad. We are here for you.

    My best wishes to you and your dad,

    Gavin

     

    #96636
    Liyang86
    Spectator

    Hi Gavin,

    Thank you so much for the article. I was wondering if anyone went through chemoradiation after adjuvant 6 month chemo?

    My dad was diagnosed with stage 3b perihilar cholangiocarcinoma in 5/2017 – locally advanced with 2 lymph nodes positive and lymph vascular invasion. He went through curative surgery in may 2017 with removal of left and right infected hepatic bile duct, common bile duct and gall bladder. Afterwards he had aspirational pneumonia and stayed in hospital till end of July. After rehab he started in August adjuvant chemo with Capecitabine for 8 cycles. Now we are done with chemo. CT shows abdominal area still clear. There is a nodule in lung continuously reducing from 10mm (August) to 7mm (November) and smaller (Feb 2018). Doctor recommended monitoring lung and   chemoradiation with proton for abdominal area where tumor was removed.

    The article indicates they don’t Recommend proton because of the proximity of stomach/intestines. Would proton cause more damage than the regular X-ray radiation? But my Dad’s radiation oncologist says proton is actually better in terms of causing damage to adjacent organs because of its better control. Any idea? I’m confused.

    Any help or suggestions are greatly appreciated. We are in Chicago area seeing radiation doctor in Chicago Proton center.

    LI

    gavin
    Moderator

    Adjuvant concurrent chemoradiation therapy in patients with microscopic residual tumor after curative resection for extrahepatic cholangiocarcinoma.

    https://www.ncbi.nlm.nih.gov/pubmed/29256155

    sfbaybreeze
    Spectator

    Cholangiocarcinoma – evolving concepts and therapeutic strategies.

    Nat Rev Clin Oncol. 2017 Oct 10. doi: 10.1038/nrclinonc.2017.157. [Epub ahead of
    print]

    Rizvi S(1), Khan SA(2)(3), Hallemeier CL(4), Kelley RK(5), Gores GJ(1).

    Author information:
    (1)Division of Gastroenterology and Hepatology, Mayo Clinic, 200 First Street
    Southwest, Rochester, Minnesota 55905, USA.
    (2)Department of Hepatology, St Mary’s Hospital, Imperial College London, Praed
    Street, London W2 1NY, UK.
    (3)Department of Hepatology, Hammersmith Hospital, Imperial College London,
    Ducane Road, London W12 0HS, UK.
    (4)Department of Radiation Oncology, Mayo Clinic, 200 First Street Southwest,
    Rochester, Minnesota 55905, USA.
    (5)The University of California, San Francisco Medical Center, 505 Parnassus
    Avenue, San Francisco, California 94143, USA.

    Cholangiocarcinoma is a disease entity comprising diverse epithelial tumours with
    features of cholangiocyte differentiation: cholangiocarcinomas are categorized
    according to anatomical location as intrahepatic (iCCA), perihilar (pCCA), or
    distal (dCCA). Each subtype has a distinct epidemiology, biology, prognosis, and
    strategy for clinical management. The incidence of cholangiocarcinoma,
    particularly iCCA, has increased globally over the past few decades. Surgical
    resection remains the mainstay of potentially curative treatment for all three
    disease subtypes, whereas liver transplantation after neoadjuvant chemoradiation
    is restricted to a subset of patients with early stage pCCA. For patients with
    advanced-stage or unresectable disease, locoregional and systemic
    chemotherapeutics are the primary treatment options. Improvements in
    external-beam radiation therapy have facilitated the treatment of
    cholangiocarcinoma. Moreover, advances in comprehensive whole-exome and
    transcriptome sequencing have defined the genetic landscape of each
    cholangiocarcinoma subtype. Accordingly, promising molecular targets for
    precision medicine have been identified, and are being evaluated in clinical
    trials, including those exploring immunotherapy. Biomarker-driven trials, in
    which patients are stratified according to anatomical cholangiocarcinoma subtype
    and genetic aberrations, will be essential in the development of targeted
    therapies. Targeting the rich tumour stroma of cholangiocarcinoma in conjunction
    with targeted therapies might also be useful. Herein, we review the evolving
    developments in the epidemiology, pathogenesis, and management of
    cholangiocarcinoma.

    DOI: 10.1038/nrclinonc.2017.157
    PMID: 28994423

    https://www.ncbi.nlm.nih.gov/pubmed/?term=28994423

    #13044
    bglass
    Moderator

    I wanted to post on a subject for which I found it hard to find information – standards for surveillance after treatment has been completed, in other words when the patient is not under active treatment.

    In my own case, I was fortunate to be respectable but due to bad tumor pathology, I had adjuvant chemotherapy followed by chemoradiation. During the radiation phase, I had between six and nine medical appointments each week, which was quite a challenge because I was still working full-time.

    When the radiation treatment ended, the sudden change in the frequency of contact with medical providers was surprising to me. Oncologist visits dropped to every three months with follow-up visits to the radiation oncologist mixed in. Blood work (liver function and metabolic panel) dropped to every three months, but I pushed for monthly CA-19-9s. And initially it was recommended CT scans drop to every six months. At that point, I was eight months out from diagnosis.

    Also, I noticed that my reports of symptoms that I associated with the treatments started to yield – in some cases – the response, ” you should go see your general practitioner for that.” Had I become excessively needy? Too dependent on frequent reassurance by my medical collective?

    I wondered at that time what the follow-up “standard” was, particularly with regards to scans –and found there is not much documentation out there, relative to other cholangiocarcinoma treatment topics. The NCCN (US) guidelines advise that scans every six months can be considered. The ESMO (European) guidelines advise 3-monthly visits during the first two years with the usual blood tests and a CT of the thorax, abdomen and pelvis, moving to every six months during years 3-5, then annual thereafter. I also found a few cases where major cancer centers post their follow-up recommendations. For example, Dana-Farber notes that follow-up is a personalized decision between doctor and patient. For biliary cancer, typical follow-up is indicated to be blood tests and radiology every three months for the first few years after treatment.

    Other sources of info include retrospective studies of patients from major cancer centers, a few of which will say how often blood tests and scans were undertaken. And of course, this discussion board reports many individual experiences. For example, the number of board discussants talking about their quarterly scans suggested to me that this is the practice in many cancer centers. For other cancers, there are research studies of whether there is a “survival benefit” to more aggressive surveillance, but I did not uncover this sort of study for cholangiocarcinoma.

    In the end, I was persuasive in advocating for quarterly scans during the first two years, timed to my quarterly oncologist appointments. The specifics of my own case suggest a higher risk of recurrence, which I understand is most likely during the first two years. I thought a lot about the risks of the scans themselves and adverse reactions to the contrast. I took a folder with the ESMO guidelines and other materials I had found to my oncologist appointment, and we discussed that this cancer can be symptomless, that the CA-19-9 is good but not a 100 percent reliable early warning signal (CT scans are also not 100% reliable in catching small changes) and what would happen if my insurance did not pay.

    In sum, the most important guidance for me was that surveillance is a personalized decision. Patient input is important, as are the specifics of each case. I also came away with the feeling that post -treatment follow-up is a topic that should be more explicitly addressed in cholangiocarcinoma research and treatment guidelines. I have calmed down and am enjoying this current phase where I am not seeing doctors so frequently. There are now even magazines that I have not read.

    Experiences and recommendations of others related to post-treatment follow-up would be great to hear about! Mary

    aniket
    Spectator

    Hi All,
    My father was diagnosed with Hilar Cholangiocarcinoma in July 2015, the tumor was locally advance type IV. He underwent ptdb stenting, internal radiation, followed by chemotherapy. He was deemed eligible for a potentially curative surgery and was operated on in November, 2015. The histopathology report was excellent, R0 resection, clean margins and a lot of the tumor had fibrosed due to pre-operative chemoradiation.
    He was undergoing adjuvant chemotherapy as a prophalytic measure to prevent recurrence. However
    4 cycles into chemo, 5 months after surgery, CT Scan now has fairly conclusive evidence of peritoneal nodularities and tumor markers are rising as well. It all points to peritoneal metastasis.
    Any help on what are our options for further treatment will be great. Conventional treatments or any new treatments which have worked like immunotherapy?

    Thanks,
    Aniket.

    gavin
    Moderator

    Aggressive surgical resection after neoadjuvant chemoradiation therapy for locally advanced intrahepatic cholangiocarcinoma.

    http://www.ncbi.nlm.nih.gov/pubmed/26192612

    wayne
    Spectator

    It looks like there is a cure for those who qualify. The Mayo Clinic created a treatment in 2002 that produces a 65% cancer-free survival for bile duct cancer at 5 years. Dr. William C. Chapman at Washington University in St. Louis, MO has been doing this treatment successfully at Barnes Jewish Hospital and other centers in Ireland and Europe since 2005 and has cured a number of patients with unresectable Klatskin and other BDC tumors (intrahepatic cholangiocarcinoma). The treatment protocol is now performed at 12 US cancer centers.

    Gastroenterology. 2012 Jul;143(1):88-98.e3; quiz e14. doi: 10.1053/j.gastro.2012.04.008. Epub 2012 Apr 12. “Efficacy of neoadjuvant chemoradiation, followed by liver transplantation, for perihilar cholangiocarcinoma at 12 US centers.”

    Read that article and become your own advocate. The problem is that most oncologists do not inform their BDC patients of this option and most cancer centers that do not perform the protocol do not tell their patients about it. Why not? There are numerous peer reviewed papers on the subject all showing very favorable outcomes and high cure rates. Even on this website the treatment is mentioned but only with a lot of negative commentary that a patient may not qualify and no clear simple direction on what to do to find out if you qualify.

    With a 5-year survival rate of less than 10% for standard treatments, shouldn’t every person diagnosed with cholangiocarcinoma be immediately told about the protocol and told to send their scans and records to one of the 12 cancers mentioned in the above article to find out if they might qualify? It won’t cost anything other than postage to do that and Dr. Chapman and others like him who are curing this devastating disease will quickly review the case at no charge to see if there is hope.

    My wife died of BDC in 2008. We were not told about this treatment at any of the centers I contacted even though the studies have been widely known in the cancer oncology community since the first major peer reviewed paper was published in 2002 by Dr. Steven Rosen at the Mayo Clinic in Rochester, MN. I will admit it angers me that the first thing a BDC patient hears when they get the dire diagnosis and prognosis from their doctor, is NOT a reference to this protocol and to the 12 cancer centers, and an offer to assist in immediately transmitting the file to one of those centers for review. What is happening is that the treating oncologist withholds the information from the patient and gives the patient (very expensive) treatments that have little more than a 10% chance of success.

    We all know at the outset that this diagnosis is a tough one. If the BDC has metastasized outside the liver the treatment is not available. If a person is old and has other complications it may be difficult to get a liver for transplant. But many BDC patients are in the 35 t0 60 years old range and healthy. There is hope and there is a cure and I know people who are cured today because they got the liver transplant after specialized “cleansing” chemo and radiation at one of these centers. Call Dr. Chapman in St. Louis or any of the Mayo Clinic Centers and they will quickly get your case evaluated. Or call me at 808-753-0290 and I will share my experiences with you and connect you with patients who have been successfully treated.

    For the doctors who don’t give their patients this information they will have to live with the knowledge that, if that patient dies of BDC, the doctor let it happen perhaps unnecessarily.

    #81214

    In reply to: Introduction

    kvolland
    Spectator

    Chrisna –
    My husband too had surgery…almost a year ago now. We were told that we were the lucky ones and has been said, it’s the only chance at a cure. There is a lot of debate about to do or not to do adjuvant chemo after the surgery. My husband chose not only chemo for 6 months but also 25 doses of radiation along with 5FU chemo. Our Onc felt it was the best shot at a long term remission or “cure”.
    Right now his quality of life is not all that great due to the effects of the chemoradiation but prior to that he was working full-time and you would not know he was or had been sick. And once he recovers from this recent round of stuff I suspect the same will be true.
    Surgery is rough. His was 14 hours and he was 12 days in the hospital and he didn’t return to work until September last year but he was working full time and feeling fine.
    And just because surgery is recommended, it doesn’t have to be done. I am sure there are those who chose not to, just as some don’t do chemo or any other treatment.
    Good luck with the 2nd opinion.

    KrisV

    #80155

    In reply to: My Introduction

    kvolland
    Spectator

    Matt –
    Your story still really does sound a lot like my husband’s. We are currently done with adjuvant chemo and are doing 5 weeks of chemoradiation (5FU continuous infusion with 25 IMRT doses).
    It does hit you really hard when you are healing from the surgery which is such a BIG surgery and they start hitting you with chemo and follow ups. We totally understand that. We were day four after surgery and Mark was finally making sense when he talked and then in comes this oncologist we had never met and starts talking about long term plans, chemo, radiation, recurrence and all that. That was only the second time I had cried at that point. We had thought surgery was all we were going to have to do.
    This really feels like a roller coaster ride through out with lots of highs and lows. No one wants a ticket to this ride either (and I normally love roller coasters too) :)
    I would be more than willing to share our experiences if you are interested. I am always willing to take a phone call (360) 880-0327 or email dazoo3563@comcast.net.

    KrisV

    #78836

    In reply to: Hello from GI ASCO

    marions
    Moderator

    I had posted the below under GI ASCO 2012 and want to place the information in the correct thread for future reference:

    Percy, Kim and I attended the AHPBA conference, one day prior to GI ASCO.

    Presentations focused on intrahepatic disease with special emphasis on surgical resection (graphic videos) and current updates of treatment protocols.
    In contrast to US physicians, surgical resections in other countries vary greatly in their approaches. Some procedures put the patient at high risk in particular with those surgeries replacing delicate portions of the pulmonary artery invaded by cancer cells. Japan, China, South America and Europe (to some extent) do not have to comply with the rigid regulations placed on US physicians.

    “Lunch at the movies” included the presentation of numerous, delicate liver resections.

    Andrea, Jason, Sara (willow) Percy and I met up the following day for GI ASCO. As mentioned previously little was geared to our cancer other than what Jason and Percy have reported on, but I attended a few poster session.

    Analysis of the genomic profile of biphenotypic tumors compared to cholangiocarcinoma and hepatocellular carcinoma.

    Poster session included a study on combined HCC/Cholangiocarcinoma. These tumors represent a minority of primary liver cancers. Genetic information for HCC and Cholangiocarcinoma exist, but little is known of the combined version. The purpose of this poster was to demonstrate the results of a targeted next-generation sequencing in regards to the genomic differences of these tumors.

    Breakdown of study:
    15 patients with combined HCC/CC
    7 patients with HCC
    6 patients with CC

    Variability in immune infiltrates and HLA expression in cholangiocarcinoma.

    The study concluded that the combined HCC/CC patients expressed genetically complex tumor expressions shared with the individual features of HCC and of CC but that the specific CTNBB1 was isolated exclusively in Hepatocellular cancer.

    Another retrospective study of 18 patients was aimed on understanding whether patients develop an immune response against their own tumors. All patients were resected and showed Tumor-infiltrating lymphocytes (white blood cells that have migrated into a tumor.) The authors suggest that this reflects a patient’s immune response to his/her tumor and their findings provide sound rationale for immunotherapy in the treatment of cholangiocarcinoma.

    Effects of the sequential administration of GEMOX followed by FOLFIRI in cholangiocarcinoma.

    This study also was retrospective of 35 patients who had been treated with second line systemic therapy consisting of GEMOX and then followed by FOLFORI. Their first line treatment consisted of Gem/Cis.
    This sequential treatment protocol proved to be beneficial with overall survival of 1 year.

    We must remember that these are relatively small studies warranting large scale studies to prove validity.

    Chemoradiation for locally advanced perihilar cholangiocarcinoma.

    This study included 52 patients from a single institution – 13 patients were treated with chemo-concurrent radiotherapy and underwent resection. Chemo consisted of gemcitabine or 5-FU. These group of patients showed a significant survival advantage compared to the patients who underwent chemo and radiation alone.

    The study concluded that above mentioned treatment should be investigated in large scale studies. A notable value of CA 19-9 after completion of 1 months treatment seemed to indicate a predictive maker of survival.
    Further studies regarding the optimal chemotherapy regime and schedule of radiation are warranted.

    I attended a closed door session focused on concluded clinical trials in adjuvant setting. The data is expected to be released toward the end of the year. Based on the outcome of these clinical trials subsequent research will conducted within the near future. I believe that many of us would like to know whether adjuvant treatments truly are effective.

    I am happy to announce that Sara (Willow) has accepted to take on my position within the NCI sponsored North American Hepatobiliary Task Force. I have served two terms and believe that Sara is a perfect fit for this position as she has a degree in biology and a good understanding of the concept of clinical trials. The physicians within the Task Force as those from the NCI were quite concerned with my stepping away, as it would leave no one representating the Cholangiocarcinoma patient community. We will keep you posted on the developments and hopefully will be able to announce her appointment to the Task Force real soon.

    Jason has shown great interest in research advocacy and you will receive numerous updates from him within the near future. Already we are spoiled by his excellent reporting skills and his ability to assimilate clinical information.

    Andrea, Jason’s wife, will work with the foundation behind the scene. She fills an enormous void for us and we can’t wait to get her started and learn from her.

    As always it was a delight to see Percy. Although we communicate via e-mail or phone calls, nothing beats spending time together as a group focused on our disease.

    Although, we did not bring back much conclusive information, we are invigorated by numerous, upcoming developments heading our way.
    And, most of all, we had a wonderful time hugging and treasuring the time spent at this year’s GI ASCO 2014.

    A few additional notes I picked up throughout speaking with physicians:

    In regards to diagnostics:

    MRI rules out other diseases
    MRCP – aids in the diagnoses
    CT – clarifies vascular and distant metastases
    Most of all though, much of the evaluation and consequent finding is center dependent. Some prefer one over the other method simply due to the fact that a particular physician(s) is better qualified to interpret the scan results.

    In regards to biopsies:

    Brushings account for no more than 20% of accuracy
    Percutaneous Transluminal biopsy is a reliable technique for examining a variety of biliary tract lesions.
    We might see less invasive biopsy procedures.

    Resection:

    The overall consensus appears to include the removal of 5 nodes while resecting.
    Hugs,

    #56862
    marions
    Moderator

    Percy, Kim and I attended the AHPBA conference, one day prior to GI ASCO.

    Presentations focused on intrahepatic disease with special emphasis on surgical resection (graphic videos) and current updates of treatment protocols.
    In contrast to US physicians, surgical resections in other countries vary greatly in their approaches. Some procedures put the patient at high risk in particular with those surgeries replacing delicate portions of the pulmonary artery invaded by cancer cells. Japan, China, South America and Europe (to some extent) do not have to comply with the rigid regulations placed on US physicians.

    “Lunch at the movies” included the presentation of numerous, delicate liver resections.

    Andrea, Jason, Sara (willow) Percy and I met up the following day for GI ASCO. As mentioned previously little was geared to our cancer other than what Jason and Percy have reported on, but I attended a few poster session.

    Analysis of the genomic profile of biphenotypic tumors compared to cholangiocarcinoma and hepatocellular carcinoma.
    Poster session included a study on combined HCC/Cholangiocarcinoma. These tumors represent a minority of primary liver cancers. Genetic information for HCC and Cholangiocarcinoma exist, but little is known of the combined version. The purpose of this poster was to demonstrate the results of a targeted next-generation sequencing in regards to the genomic differences of these tumors.

    Breakdown of study:
    15 patients with combined HCC/CC
    7 patients with HCC
    6 patients with CC

    Variability in immune infiltrates and HLA expression in cholangiocarcinoma.

    The study concluded that the combined HCC/CC patients expressed genetically complex tumor expressions shared with the individual features of HCC and of CC but that the specific CTNBB1 was isolated exclusively in Hepatocellular cancer.

    Another retrospective study of 18 patients was aimed on understanding whether patients develop an immune response against their own tumors. All patients were resected and showed Tumor-infiltrating lymphocytes (white blood cells that have migrated into a tumor.) The authors suggest that this reflects a patient’s immune response to his/her tumor and their findings provide sound rationale for immunotherapy in the treatment of cholangiocarcinoma.

    Effects of the sequential administration of GEMOX followed by FOLFIRI in cholangiocarcinoma.

    This study also was retrospective of 35 patients who had been treated with second line systemic therapy consisting of GEMOX and then followed by FOLFORI. Their first line treatment consisted of Gem/Cis.
    This sequential treatment protocol proved to be beneficial with overall survival of 1 year.

    We must remember that these are relatively small studies warranting large scale studies to prove validity.

    Chemoradiation for locally advanced perihilar cholangiocarcinoma.

    This study included 52 patients from a single institution – 13 patients were treated with chemo-concurrent radiotherapy and underwent resection. Chemo consisted of gemcitabine or 5-FU. These group of patients showed a significant survival advantage compared to the patients who underwent chemo and radiation alone.
    The study concluded that above mentioned treatment should be investigated in large scale studies. A notable value of CA 19-9 after completion of 1 months treatment seemed to indicate a predictive maker of survival.
    Further studies regarding the optimal chemotherapy regime and schedule of radiation are warranted.

    I attended a closed door session focused on concluded clinical trials in adjuvant setting. The data is expected to be released toward the end of the year. Based on the outcome of these clinical trials subsequent research will conducted within the near future. I believe that many of us would like to know whether adjuvant treatments truly are effective.

    I am happy to announce that Sara (Willow) has accepted to take on my position within the NCI sponsored North American Hepatobiliary Task Force. I have served two terms and believe that Sara is a perfect fit for this position as she has a degree in biology and a good understanding of the concept of clinical trials. The physicians within the Task Force as those from the NCI were quite concerned with my stepping away, as it would leave no one representating the Cholangiocarcinoma patient community. We will keep you posted on the developments and hopefully will be able to announce her appointment to the Task Force real soon.
    Jason has shown great interest in research advocacy and you will receive numerous updates from him within the near future. Already we are spoiled by his excellent reporting skills and his ability to assimilate clinical information.

    Andrea, Jason’s wife, will work with the foundation behind the scene. She fills an enormous void for us and we can’t wait to get her started and learn from her.

    As always it was a delight to see Percy. Although we communicate via e-mail or phone calls, nothing beats spending time together as a group focused on our disease.

    Although, we did not bring back much conclusive information, we are invigorated by numerous, upcoming developments heading our way.

    And, most of all, we had a wonderful time hugging and treasuring the time spent at this year’s GI ASCO 2014.

    Hugs to all,
    Marion

    #9014
    pcl1029
    Member

    Hi, everyone,
    Knowing that ourselves or our love ones have Dx of CCA is worse; but trying to do or obtain the same treatment that someone just mentioned on this message board that may fit our situations are of concern if not concur with our oncologists or 2nd opinions. and the results may be worsen than before.

    Please remember, nothing come easy if we do not gain knowledge thru studying this disease, even so,it dose not guarantee we will find a cure soon.

    The following steps that I learned may be of help if interested.
    Diagnosis of CCA
    Usually start with oncologist, but ask them to refer you for a surgical consult too.
    1. Surgery consult first if possible by liver surgeon
    (A)


    Resectable ,then surgery and follow with chemoradiation ,adjuvant chemotherapy or Targeted agents treatment ,CT or PET ( oncologist choice). (B)


    Unresectable , then

    2. a. consult with interventional radiologist(IR) –( for RFA, microwave ablation, IRE, chemoembo ,radioembo or cryoablation,) and/or
    b. consult with oncologist radiologists (radiation as SBRT,IMRT or PDT etc)

    3.GI specialist to put in stents if needed to relieve symptoms of jaundice,itching ,ascites etc.

    4. Medical oncology consult with an oncologist,both for resectable (usually after 2-3 month of the surgery) and for unresectable CCA for cancer chemotherapy to extend the life of the patient.
    When current treatment plans exhausted ( either too much side effects or the therapy don’t work ); ask oncologist to recommend a clinical trial that may fit your situation the best. Or you can contact the clinical trial coordinator.

    5. for planning future treatments, consider a “next-generation sequencing” (NGS) genomic profile which offer by the large teaching hospitals in the States.

    6. other palliative treatment or hospice as advised by medical professionals at the end of the journey.

    7. DO not forget “No treatment “is another option too for “quality of life” rather than “quantity of life” in treating this disease.

    Since recently , cancers treatment by the top cancer centers are using ” Next generation sequencing genomic profile” as the tool to help oncologists to provide a more custom fit and personalized treatment for the specific patient. And more and more of the clinical trial agents are based on ” targeted gene mutation or over expressions”. It may be of benefit to get one done as a road map for future Treatment.
    Yes, patients can join any clinical trials they are qualified. But if you know or your oncologist know which one is a better trial for you, than you will save time and prolong your quality of life much better.
    In short , I hope the above steps and comment helps; and as always,consult your doctor before change any treatment plans.

    If you want all the above, the best way is to get a multidisciplinary team approach consult for CCA, thru Mass General,Mayo Clinic, UCSF, USC, or MD Anderson at Houston, Washington University in St. Louise ,Columbia Presbyterian in New York,others like John Hopkins, Sloan-Kettering , Emory in Atlanta,can do the same if asked.
    God bless.

    #73855

    In reply to: New member

    pcl1029
    Member

    Hi.

    Please note: I am only a patient and not a doctor.

    According to NCCN guidelines: (American national comprehensive cancer network):
    Extra hepatic CCA:( ECCA)
    . For patients with resected,margin-negative ECCA with negative regional nodes, observation,fluoropyrimidine or gemcitabine based chemotherapy or fluropyrimidine based chemo radiotherapy are acceptable options.

    According to (ESMO),the Europe Society of Medical Oncology:
    . For both intra and extra hepatic CCA, suggest supportive care or palliative chemotherapy and/ or radiotherapy after a noncurrative resection, and consideration of postoperative chemo radiotherapy as an option after complete surgical resection.

    So if I were your dad, since he is by all standard is relative young, and if he does not have other health problems like diabetes or fast heart beat( A Fib) and he has the distal kind of CCA which recurrence is the lowest among other form of CCA( 50%) I will suggest to follow the NCCN or the ESMO guidelines to have adjuvant chemoradiation as indicated. And follow your dad’s surgeon suggestion . It will provide a 10-15% chance for decreasing the chance of recurrence in the future.
    But it is not a guarantee either.
    But for sure, this will be a life changing event that no one wants, but the key is to keep uptodate knowledge about this disease ,CT Scan every3-6month, and try to catch the recurrence earlier enough to allow more treatment option rather than only chemotherapy.
    Will your dad be treated here in the States in the future?
    God bless.

    2000miler
    Spectator

    Marion – If you mean there are no large (phase 3) randomized studies reflecting survival benefit derived from post resection adjuvant therapy, I agree with that.

    However, there are small retrospective studies, based on small to large populations, that show there is a benefit. There are others that also say there is no benefit. Maybe others even show a negative impact.

    Just glancing at some of the papers on my desk:

    1. Murakami, “Gemcitabine-based adjuvant chemotherapy improves survival after aggressive surgery for hilar cholangiocarcinoma,”, 2009, 42 patients, “Five-year actuarial survival rates of patients who did or did not receive adjuvant gemcitabine-based chemotherapy were 57% and 23%, respectively (P=0.026).”

    2. Shinohara, “Radiotherpy is associated with improved survival in adjuvant and palliative treatment of extrahepatic cholangiocarcinomas”, 2009, 4,758 patients, “The median overall survival time was 16 months for surgery and RT and 9 months for surgery alone.

    3. Nakeeb, “Radiation therapy, chemotherapy and chemoradiation in hilar cholagiocarcinoma”, 2005, “A carefully controlled trial from the John Hopkins Hospital did not demonstrate any benefit for adjuvant radiation therapy. A number of phase II trials of chemotherapy have demonstrated modest response rates (20-40%)…… Neither radiation therapy nor chemotherapy alone has been proven to prolong survival in completely or partially resected patients or in unresected patients.”

    4. Cereda, “Adjuvant treatment in biliary tract cancer: To treat or not to treat?”, 2011, “A retrospective series of 73 patients with gallbladder cancer treated between 1985 and 2004 at Mayo Clinic suggested that adjuvant CRT may obtain a statistically significant improvement in OS only for patients with lymph node involvement ….. A more recent phase III trial exploring the role of single agent adjuvant chemotherapy with either gemcitabine or 5-fluorouracil, in 304 patients with ampullary adenocarcinoma submitted to curative resection did not demonstrate a survival benefit for any of the adjuvant therapy arms when compared to surgery alone.”

    And there are many more. I should look at all this in detail and try and figure out why the results vary so much.

    Bruce

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