surf2kona

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  • in reply to: Want to do a Fundraiser #28884
    surf2kona
    Member

    Angela,

    Did you ever get any info on this? I am interested in doing a golf tournament. I think that should be pretty easy to set up, but we’re not sure what to do with the money. We want to make sure that it goes directly to cholangio research.

    Thanks,

    Brian

    in reply to: New diagnosis cholangiocarcinoma inoperable #35905
    surf2kona
    Member

    Sorry to hear about your fiancee. My brother is 53 was diagnosed last Nov.

    From what I understand, you don’t want it in your lymph system. M brother’;s lymph nodes were also swollen, but a biopsy did not reveal cancer cells. He has done over four rounds of Gemzcar + cisplatin. His tumor area has been reduced by about 60%. The nodes are no longer swollen.

    He was initally diagnosed as inoperable, but we have found a couple of surgeons that are willing to operate now. We are meeting with Dr. Kato at Columbia-Presbyterian in NY. He does a surgery where he actually removes the affected organs from the body, cleans of the cancer and puts them back. See article below:

    http://childrensnyp.org/mschony/kato-transplant-specialist.html

    We have also talked to Sloan-Kettering in NY, MD Anderson in Houston and Mayo in Rochester.

    We are also doing major diet changes (organic only, cruciferous vegetables, less meat, no refined sugar or flour, whole grains only). We are also using citrus pectin, turmeric, ultra mar and mushroom extracts of off-chemo weeks. “anti-cancer: a new way of life” is a great book.

    Hope this helps

    in reply to: Chinese supplements #35636
    surf2kona
    Member

    I did alot of research on alternative treatments. My brother’s doctor is very traditional and told us not to do anything (even diet changes).

    My brother decided to do the diet changes anyway. Lots of cruciferous vegetables (broccoli, cauliflower and kale) and fresh shitake and maitake mushrooms.

    He also does some supplements, but only takes those on his off-weeks from chemo, He has been taking ultra-mar and citrus pectin and milk thistle and turmeric.

    He has had a 50% reduction in tumor area and minimal side effects, so we’re pretty happy with the first three months since his diagnosis.

    He is also off all refined sugars, white rice and white bread.

    in reply to: First Scans on Gemcis – Great News #32556
    surf2kona
    Member

    My brother is also on Gemzcar + Cisplatin. His tumor area is down 50% from his first scan. He is on the third round with a new scan next month.

    Keep it up !!!

    in reply to: Supplements with Chemo? #34285
    surf2kona
    Member

    Hi All,

    We came up with the list of supplements for my brother from two different nurtritionists and lots of on-line research. The Sloan-kettering site seems to give a very scientific and relatively unbiased view of hundreds of alternative remedies and supplements. I did forget that he is also taking milk thistle.

    I set up a free yahoo group which contains the files that I have and some helpful links. The address for that site is: http://health.groups.yahoo.com/group/Bile_Duct_Cancer/

    Thanks for all the helpful info.

    Brian

    in reply to: Good CT scan, yayy! #33767
    surf2kona
    Member

    Kristin,

    My brother is relatively new to cc. I would love to get the same news about him next year.

    Can you tell me what treatment you are using and where you are being treated.

    Thanks,

    Brian

Viewing 6 posts - 1 through 6 (of 6 total)