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  • #63853
    marions
    Moderator

    Joanna….I would like to follow LeeAnn and welcome you to our site. Like you I believe in 2nd, third, or even 4th opinions when diagnosed with this cancer. Specialists disagree with their approaches and one would want to make sure to exhaust all options available.
    The shrinkage of the tumor is remarkable and I am thrilled to hear that you are offered the possibility of a resection.
    I believe that this is the study you are enrolled in:
    http://clinicaltrials.gov/ct2/show/NCT01308840
    To qualify one must have the KRAS mutation. How are you handling the side effects, if any?

    Thank you for joining our site and sharing your inspiring story with us. I wish for continued success with the clinical trial and am sending tons of good wishes your way. Please, stay with us.
    Hugs,
    Marion

    #63852
    leeann
    Participant

    Hi Joanna,
    Sorry to meet you this way. I know how you feel, I’m 46 going on 47 with 2 young kids(10,12). If I could have 10 more years……

    I was dx last oct and had resection nov. with clean margin and no nodes recomm no further treatment at the time. I asked many onc about chemo or radiation but most of them said no since there’s no data supports it. So I decided not do it. I got my regular 3 months ct and blood works. CT was clear but my ca19-9 was rising slowly and was a little concerned but again since nothing on CT they wanted to wait. Well my last CT (July) showed a recurrence and having pain on my right side where a new tumor is…
    So long waited chemo finally started today. It was not as bad as I expected (knock on wood) hopefully this would get rid of stinking tumor.

    Joanna, hoping for sucessful resection and hope to hear more good news.
    Let’s do it together for our young ones :-)

    #7271
    joteach
    Member

    Hi, my name is Joanna. I would like to implore anyone diagnosed to get a 2nd, 3rd, and even 4th opinion about treatment options…I am convinced my 2nd opinion saved my life. I am 47 years old and was diagnosed in April. I didn’t have any symptoms but could feel a hard mass in my upper right abdominal area so I convinced my doctor (who thought it was nothing) to send me for an ultrasound, which showed a 10 cm tumor. Many tests and a biopsy later, it was diagnosed as cholangiocarcinoma. It originated in the internal ducts of my liver. The MRI results seemed to indicate that the tumor was contained in my left lobe, so surgery was scheduled for 2 days after my diagnosis at Hartford Hospital. When they did the laproscopic look first, however, they realized it was not contained but had spread to a large part of my liver and was covering the hepatic artery. I awoke out of anesthesia to the news they couldn’t operate and to a surgical resident telling me it was “terminal.” You can imagine what that did to me. He got reamed out by the chief surgeon, but she gave me less than a 10 percent chance of it shrinking enough with chemo. to ever be resected or cured. When I asked if it was possible to live 10 years so I could raise my kids ( I have 9 year old twins), she said no. I went into a pretty dark place for awhile, but then things took an amazing turn for me. My oncologist in Hartford asked if I would go to Mass General to meet with his brother, who is a radiation oncologist leading a clinical research study on cholangiocarcinoma in conjunction with Dana Farber. The study involves using proton beams on the cancer instead of photon beams, which is supposed to help save more of the healthy tissue. Of course I jumped at the chance and we went to Boston and met with him (Dr. Ted Hong) and Dr. Eunice Kwak, who is leading a clinical trial in chemotherapy. Luckily I qualified for both and began chemotherapy every two weeks in Boston. The trial is studying the effects of adding the drug Panitumumab to the drugs Gemzar and Oxaliplatin as treatments. After two chemo. sessions I could no longer feel the mass. My first CAT scan, after the 4th chemo. dose, showed significant shrinkage, as did my 2nd CAT scan. I met with both doctors after that scan, and they felt that after two or three more chemo. treatments they would try to kill the rest with radiation. They also said they were going to run my latest scan by their surgeon to get his thoughts. Well, he called me as soon as he saw it and asked for a meeting. We drove up on Wednesday and met with Dr. David Berger. He said the tumor is no longer on the artery and based on what he sees he believes he can surgically remove it! My surgery is tentatively scheduled for the 4th of September. They are just trying to make sure that if he finds anything in the laproscopic look they do first that would make him change his mind, I am not kicked out of the study…they have a strict protocol of time frames they have to follow for chemo. and I am not having mine next week in order to prepare for surgery. But he also said that if he couldn’t do it now, he is confident it will be at that point after some radiation. He really feels, though, that based on what he sees on my scans, it is resectable now! Less than 5 months after being told I was terminal. Please don’t give up hope…I did for awhile and it was a place I never want to be again. During this time a co-worker of mine, who is a cancer survivor, taught me the power of positive thinking on the body. I believe that helped me as much as the chemo.
    Go wherever you need to go, find whatever trial you can, but don’t give up. I can’t recommend Mass General highly enough for anybody who lives in the East! Please say a little prayer for me that my surgery will be successful on the 4th. I’ll update you then.
    Keep fighting the good fight everyone!
    Fondly,
    Joanna

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