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  • #55013
    pamela
    Spectator

    Dear Sandtdad,

    I just wanted to take a minute and welcome you to the site. My daughter, age 25 has CC too. She also has one big tumor on the right side of her liver and small ones on the left side. She is on gem/cis and 5FU. Her big tumor has shrunk 2 cm. each way so far and her little ones are smaller too. She actually feels better being on the chemo. I hope your treatments keep working and one day you will be able to have surgery. Please visit this site often. The support is awesome. Take care.

    -Pam

    #55012
    sandtdad
    Member

    Plc1029
    Thank you for he advice. We are already talking next steps for when this treatment starts to fade. We actually had to do it earlier due to some skin rashes that we finally got under control
    As part of the trial have scans every eight weeks
    I am not really close to Rfa or surgery territory yet…but hope with a little more improvement to start down the y spheres road
    That seems to be another area where the good results buzz is picking up

    To anyone else that has questions about panitumimab trial please feel free to ask

    #55011
    pcl1029
    Member

    Hi,
    Thanks .
    Just a reminder,be always aware of the drug resistance and try to research as much as you can for alternatives.(ie: other molecularly targeted agents). If the tumors shrink enough,consider other options like RFA or radioembo Y90,or chemoembolization. Cat scan or MRI or PET every 3 month to monitor the CC for early treatment options just in case. No more seafood or sushi. Somehow I always suspect seafood is a risk factor for CC.
    Keep in touch and I hope we can learn from each other.
    God bless you and your family.

    #55010
    sandtdad
    Member

    Like many on this site I did not have many symptoms
    I started to get some pain after fatty meals and had a bad couple of days after a weekend away..but the pain was not too bad…I was thinking gall bladder
    My diet was good and loved seafood
    Again like many on this site I am in pretty good health …46 year old
    Run 4 times a week plus 2 days at the gym…coach my sons hockey and basketball teams
    MGH did do the full bio markers and this was the only match for existing medication….but they did say that there is another marker that is getting a lot of research attention (because it has applications across many cancers) that I am a match for that ad could be seeing new trials within a year…so I need to keep an eye out
    The current treatment has seen response in both the large and small tumors
    Shrinkage as well as not seeing some of the smaller ones
    So we live scan to scan and hope that this treatment leads to another more targeted treatment down the road

    #55009
    lainy
    Spectator

    Dear sandtdad, welcome to our wonderful family of the most courageous and caring people the world over. Congratulations on seeing some positive gains for yourself against the CC. Attitude plays such an important part. We are happy you found us but sorry you had to. All the research you are doing is the best way to fight CC as knowledge is powerful but unfortunately most of what we know is that we know not much. Please keep us updated on how you are doing as we truly care.

    #55008
    pcl1029
    Member

    Hi,
    Mass general is a very good hospital.I know they automatically perform bio markers study for each patient.That means it will provide you more treatment options .When was the most recent CAT scan or MRI done and what did it say about the tumors response especially the many small ones? Did the small ones have partial responses like shrinkage or just being stable? Are your VEGF1 2 or 3 bio markers got tested and anti-angiogenisis drugs like Avastin can be used? As far as I know,Avastin shows good results too. May I ask how old are you? And are you general in good health? How did you discover you have this horrible disease? Jaundice? Itching? Do you like seafood in general? Dark urine? Hepatitis? PSC? Heartburn? Are you on statinS?
    Thanks for your answers in advance?
    God bless.

    #55007
    sandtdad
    Member

    Pcl1029
    That study was one of the reasons I decided to give the trial a shot
    Those response rated/complete response rates/resection rates seemed higher
    Than anything i had seen
    I know it was a small single site study
    But hope springs eternal

    #55006
    pcl1029
    Member

    Hi,
    Also,if you are belonging to the KRAS wild type genotype,your chance of your tumors response will be much better than otherwise.
    God bless.

    #55005
    pcl1029
    Member

    Hi,
    Below is a study about GEMOX+cetuximab.
    But be careful when you read about the results;it does not provide the long term results of the study eg. drug resistance.

    Cetuximab, gemcitabine, and oxaliplatin in patients with unresectable advanced or metastatic biliary tract cancer: a phase 2 study
    Dr Birgit Gruenberger MD a Corresponding AuthorEmail Address, Johannes Schueller MD b, Ute Heubrandtner MPharm c, Fritz Wrba MD e, Dietmar Tamandl MD f, Klaus Kaczirek MD f, Rudolf Roka MD d, Sandra Freimann-Pircher MPharm c, Thomas Gruenberger MD f
    Summary
    Background
    Patients with biliary tract cancer have a poor prognosis, and, until recently, no standard palliative chemotherapy has been defined. We aimed to investigate the efficacy and safety of cetuximab in combination with gemcitabine and oxaliplatin (GEMOX) for first-line treatment of biliary tract cancer.
    Methods
    From Oct 1, 2006, to July 26, 2008, patients with unresectable locally advanced or metastatic biliary tract cancer were sequentially enrolled and treated at one centre in Austria. All patients received intravenous infusions of 500 mg/m2 cetuximab on day 1, 1000 mg/m2 gemcitabine on day 1, and 100 mg/m2 oxaliplatin on day 2, every 2 weeks for 12 cycles. The primary outcome was overall response rate. Analysis was by intention to treat. Adverse reactions were assessed according to National Cancer Institute Common Toxicity Criteria. The study is completed and registered with ClinicalTrials.gov, number NCT01216345.
    Findings
    30 patients with median age of 68 years (IQR 62—73) were enrolled and included in the analysis. Objective response occurred in 19 patients (63%; 95% CI 56·2—69·8), of whom three (10%; 3·2—16·8) achieved complete response, and 16 (53%; 46·2—59·8) achieved partial response. Nine patients underwent potentially curative secondary resection after major response to therapy. Grade 3 adverse events were recorded in 13 patients: skin rash (n=4), peripheral neuropathy (n=4), thrombocytopenia (n=3), nausea (n=1), diarrhoea (n=1), and neutropenia (n=1); no grade 4 adverse events were recorded.
    Interpretation
    Cetuximab plus GEMOX was well tolerated and had encouraging antitumour activity, leading to secondary resection in a third of patients. These findings warrant further study of cetuximab plus GEMOX in a large randomised trial.
    God bless

    #55004
    sandtdad
    Member

    I believe I am stage 4 intraheptic. I have one large tumor in one lobe of the liver and had many small ones on the other side.
    I have been on the trial since mid july at mass general hospital
    I have tried to research many of the panitumimab and centuximab results but data seems scarce
    And discussion boards where people discuss recent experience is limited as well

    I am just hoping maybe some of the unknown around the drugs means there is opportunity for better outcomes

    #55003
    pcl1029
    Member

    Hi,
    Can you tell us what stage and what do you have,intrahepatic CC or extrahepatic CC?
    How long have you been on the clinical trial? and
    where your are being treated now?

    Below are some info with regard to panitumumab and cetuximab,and you may look at GEMOX and cetuximab trials to get some insight into your treatment since the two agents are very similiar but there are more studies done on GEMOX+cetuximab than GEMOX+panitumumab

    Two epidermal growth-factor receptor (EGFR)-targeted monoclonal antibodies are currently used as second-line or third-line chemotherapy for metastatic colorectal cancer: cetuximab, an IgG1 chimeric monoclonal antibody, and panitumumab, a fully humanised IgG2 antibody. Preclinical data suggest a similar mode of action for these two drugs.
    another source indicated some difference between the mode of action as follows:
    Although they both target the EGFR, panitumumab (IgG2) and cetuximab (IgG1) differ in their isotype and they might differ in their mechanism of action. Monoclonal antibodies of the IgG1 isotype may activate the complement pathway and mediate antibody-dependent cellular cytotoxicity (ADCC).[4]
    God bless.

    #5966
    sandtdad
    Member

    I have been logging on to this site since being diagnosed back in the early summer. But this is my first post. I have been amazed at how open and brave so many of you are

    I am hoping to try and find others who are undergoing similar treatments. I was diagnosed with non-resectible cholangiocarcinoma and started on three drug trial, gem/ox + panitumimab.

    Although the side effects have been tough i have seen some gains against the cancer. I have been surprised that there are not a few more people on this trial given the number of people being given gem/ox as treatment

    I would love to hear any first hand experiences or opinions on treatments that combine chemo and a monoclodial antibody
    Thank you

Viewing 12 posts - 16 through 27 (of 27 total)
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