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  • in reply to: Introduction #14745

    Hi Caroline,
    My Met was more to the back of my hip bone. There was a question at one point of it being by my joint but they decided what they were seeing was most likely a reaction to the radiation.

    I had 12 sessions of Radiation. I have to say I had no problem with them at all. I had no burning or discomfort. I did have some dry skin and just kept a good lotion on the area.
    Also I am on a Macrobiotic diet and my counselor suggested Miso soup everyday during radiation and continuing on for a couple weeks after. The thought is that it helps protect the body from the effects of radiation. I love Miso soup so I followed instructions.

    I have not been restricted in my activities. I never asked about skiing. I have played golf and walked quite often.

    I also am on Zometa for bone strength. I have been getting it for about a year and a half. It can cause bone pain and aches for a few days but I found as time went on I had an easier time of it or learned how to handle it better. It was suggested to me that walking might help with the bone pain caused by Zometa.
    the Zometa seems to have kept the C from causing me any new mets in my bones.

    I was on Xeloda for about 9 months. It was wonderful not to have to go in for treatment. I took it on it’s own.

    I hope you do well with your treatments and I hope some of this is helpful.
    I’ll be thinking of you.
    I went to your online diary. That is a great idea for keeping everyone up to date.
    CLR (Cindy)

    in reply to: Introduction #14740

    Hi Caroline Stoufer,
    The bone Met was from the CC. I started have pain when walking. At first I thought it may be just some arthritis but had a bone scan.
    I had 12 treatments of Radiation to the area and it seems to be stable since then.
    I was diagnosed Sept. of 03 and this happened in the spring of 04.

    I still have a bit of discomfort in the area from time to time but scans show things to be stable.
    Good idea to have it checked out.

    Let me know what happens with your scan.
    Stay positive. :-)

    in reply to: Introduction #14737

    Hi Jeff G.
    My sister watches this site and forwarded me your message. I was so very excited to hear how well you are doing. Seven years is fantastic.
    I was diagnosed in Sept. 2003 with CC stage IV. My liver was involved with Mets to both lungs. I was told I was treatable but not curable and treatabel meant 6 month to 1 year approx.
    Since 2003 I have had a met to my left hip and had radiation to that area. It seems to have taken care of it.
    I have had no surgeries. What ever we looked into for surgery I was told I was not a candidate.
    What do I credit my 3 years of being here and enjoying life to?
    Diet! I started to eat a Macrobiotic diet which I believe has taken a lot of stress off of my liver. It hasn’t been an easy transistion but I do my best.
    I also do a lot of Visualization and listen to CD’s dealing with visualization and and positive affermations.
    I go for Acupuncture, Cranial Sacral therapy. I feel these this keep my body in balance.
    I too used E tea for a while and need to get back to that.
    I do not take a lot of supplements but do use Milk Thistle, which is good for the liver.
    I am on my 4 line of Chemo. I have a doctor at a larger hospital that felt 4 line Chemo does not work with CC. I have chosen not to listen to those negitive words and keep moving ahead.
    Any suggestions you have or if anyone out there knows of any new treatments being used I would love to hear about them.
    God Bless you and keep positive and peaceful.

    in reply to: Intro #14155

    I was diagnosed with metastatic bile duct cancer in Sept. 2003. I was not a candidate for surgery. I had 9 months of Gemzar/ cisplatin, then after a break of a few weeks started on Zelota (5FU). I was able to stay on that for 9 months before growth in my liver tumors and lungs started. I also had a metastasis to my hip.
    My latest drug was Taxotere. It has worked well for almost a year but my doctors feel it has run it course. I was told a fourth round of Chemo usually isn’t helpful. I am looking for a trial (as are my doctors) that may be helpful to me as stopping treatment isn’t an option in my mind. My liver function is still normal and has been all along. I live in central MA near CT and only 1 1/2 hr from Boston. I have received great treatment at home and at Mass General. has anyone had any similar experiences and does anyone have any suggestions?

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