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  • in reply to: Survival…Please tell us your latest milestone #64701
    John Thomas
    Participant

    Good Friday is always special to me. Good Friday, 2009 I officially became a member of this small club. Today, five years later, I am still a member, although slightly inactive. I have been very busy living! Despite the statistics, some of us make it through. I am so grateful for the past five years, I can’t express it.

    in reply to: Treatment Centers/Physicians #29956
    John Thomas
    Participant

    For folks in the Santa Cruz-Monterey Bay Area, I have been treated/advised by the following physicians:

    1) Dr. Michael Yen: Oncology (Santa Cruz)

    2) Dr. Jay Meisel: Radiation Oncology (Santa Cruz)

    3) Dr. Lester Miller: Internist,Rheumatology (Santa Cruz)

    4) Dr. Carlos Esquivel: Stanford Hospital, Surgery Center

    5) Dr. George Fisher: Stanford Hospital, Cancer Center

    Resources are limited in this area, we are fortunate to be near Stanford. Dr. Fisher is an authority on CC. Dr. Miller has practiced and taught for forty years, and is my local “go to guy” for advice.

    in reply to: Brother and intrahepatic CC #50425
    John Thomas
    Participant

    Paul,

    I suggest Dr. George Fisher at Stanford as another resource. I was told I had inoperable, incurable ICC two years ago. I chose Radiation, Xeloda and Gemzar as therapy. I stopped treatment a year ago. My last MRI shows no metastasis and no disease progression. I believe your faith and your will are major factors in living with this disease. Our prayers are with your brother and family.

    Best wishes,

    John Thomas

    in reply to: She is in his hands now #43078
    John Thomas
    Participant

    Dear Seabee,
    I am so sorry to read of your wife’s passing. But what a wonderful seed she planted through her “sign”. That “quiet, still voice within”, is my constant reassurance. May you also find this peace on your journey.
    God Bless,
    John Thomas

    in reply to: The Emotional Roller Coaster #41242
    John Thomas
    Participant

    Dear Seabee,
    My heart goes out to you. I have watched my wife struggle with the reality of this disease as more doors are closed to us. As a former Marine,I understand the imperative of moving forward. Every time we are knocked down, we look up. Our love and our faith are what supports us. Feel my arm around your shoulders, you are not alone.
    Semper Fi,
    John Thomas

    in reply to: My story, in case it helps… #39829
    John Thomas
    Participant

    Andy,

    We are sharing the same time frame for this disease. and also a similar mindset. I feel that without the option of surgery, the only choice we have is treat this as a chronic disease. I am having PET and MRI this week, which I know will confirm my belief. Best wishes for your journey.

    John Thomas

    in reply to: Chemo #39797
    John Thomas
    Participant

    Hello Pam,

    I completed nine rounds of Gemzar (gemcitibine) in March,2010. Fatigue,evening fevers,some nausea and lack of appetite were my primary complaints. My wife made smoothies daily, papaya and pineapple were my favorites. Gemzar was chosen as a conservative, palliative measure. I believe Gemzar afforded me the best opportunity to live the life I choose.

    Best wishes,

    John Thomas

    in reply to: Out of the shadows…… #40274
    John Thomas
    Participant

    Hello Margaret,

    I don’t know of a correlation between Xeloda and Rheumatoid Arthritis. We have an English cousin with full-blown RA, and his treatment is a mild chemo and steroids. Perhaps Tom would benefit from a different steroid.
    For me, besides the pain/swelling relief, an added plus of the Prednisone is appetite stimulation. I am now on a “See Food” Diet. I am not so sure that I want to go back on chemo because I feel so good. I will make a decision after this months PET and MRI.

    Best wishes for you and Tom, we pray that he can find some relief.

    John & Linda Thomas

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