Hi I'm new here - any suggestions?

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TheBean
TheBean Member Posts: 9
edited March 2014 in Colorectal Cancer #1
Hi, I was diagnosed with rectal cancer with metz to the liver last year. I have had radiation, surgery with permanent ileostomy and, so far, 16 months of chemo. I started with FOLFOX with Avastin, then that quit working so I was switched to Camptosar and Erbetux. That worked well for a bit then no so much. Avastin was added back in and was working for a while but now it looks like that isn't doing much again. I should be having a CT this week to see what is going on but in the past the culprit has been a new tumor in the pelvic area. The liver tumors could not be surgically removed because of proximity to vena cava but the chemo has made them shrink. I gues I am wondering if anyone else has run through these things and if tere are other things to try out there. Of course - my doctor is on vacation just now and the doctor covering is very careful not to step on her toes - unfortunately that means I am not necessarily getting all my questions answered just yet. Suggestions or even moral support would be greatly appreciated.

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  • Patrusha
    Patrusha Member Posts: 487
    #2
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    Hi bean, boy you've been through a lot, my friend. Keep up the good fight. Sounds like you're in the midst of the latest trial with the beast and with CT scans around the corner it can be nerve jangling. But just remember all that you've come through so far. You're a survivor in every sense of the word. Pleased to meet your acquaintance.

    As for your liver mets, what about RFA? Is that a possibility for you? Or does the vena cava prohibit RFA?

    Be encouraged, Bean, that you are not alone. There are many of us fighting this battle and many even go on to slay the beast... always hold on to that possibility.

    (((((HUGS))))))
  • spongebob
    spongebob Member Posts: 2,565 Member
    #3
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    Mornin, Bean -

    I haven't been in your shoes, but know that there are those here that have been. Welcome to the SemiColons - we're all here for you.

    Have you checked out the ACS listing of clinical trials? Perhaps there's something there that might be available to you. Also check the National Cancer Institute site - there is a lot of good info there, too. Lastly, I am sure a number of my cohorts will make some excellent recommendations for dietary resources and literature.

    Keeping you in my thoughts and prayers.

    - SpongeBob
  • KathiM
    KathiM Member Posts: 8,028 Member
    #4
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    I agree. Look into clinical trials. Some of the best treatments have come from there....
    Either way, sounds like you are a strong fighter...laugh at the beast as much as possible, it HATES laughter...

    Welcome to the semi-colons!
    Hugs, Kathi
  • scouty
    scouty Member Posts: 1,965 Member
    #5
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    Hi The Bean,

    Check out my personal website here and you will see that I too was stage IV rectal cancer with 2-3 mets to liver and 1 to my left lung. Surgery was not an option for any of the tumors back in March of 2004. I did 8 months of folfox with avastin until everything plateaued and I decided to try alternative routes. I found a local clinical nutritionist (notice I said clinical, not just a nutritionist!!!!!!). I stopped chemo, completely changed my diet to an all organic/natural one and took all the supplements my new doc recommended. That was mid Nov. 2004. A year later all my testing was showing me as NED (no evidence of disease). Surgery this past January showed the liver to be clean, all lymph nodes were negative but they did find a teeny tiny tumor where my original rectal tumor had been and it was removed along with the foot they usually take out. I just had my quarterly testing a few weeks ago and am still NED and it has been almost 2 years since I stopped chemo. My oncologist just keeps telling me he can't explain it, but to keep up whatever I am doing.

    It can be done!!!!!!!!

    Lisa P.
  • kangatoo
    kangatoo Member Posts: 2,105 Member
    #6
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    scouty said:

    Hi The Bean,

    Check out my personal website here and you will see that I too was stage IV rectal cancer with 2-3 mets to liver and 1 to my left lung. Surgery was not an option for any of the tumors back in March of 2004. I did 8 months of folfox with avastin until everything plateaued and I decided to try alternative routes. I found a local clinical nutritionist (notice I said clinical, not just a nutritionist!!!!!!). I stopped chemo, completely changed my diet to an all organic/natural one and took all the supplements my new doc recommended. That was mid Nov. 2004. A year later all my testing was showing me as NED (no evidence of disease). Surgery this past January showed the liver to be clean, all lymph nodes were negative but they did find a teeny tiny tumor where my original rectal tumor had been and it was removed along with the foot they usually take out. I just had my quarterly testing a few weeks ago and am still NED and it has been almost 2 years since I stopped chemo. My oncologist just keeps telling me he can't explain it, but to keep up whatever I am doing.

    It can be done!!!!!!!!

    Lisa P.

    Hi Bean.Welcome to tha family. Take a good hard look at Scouty's post.There are so many here to tell you that you are not alone and that although your journey may be tough at times there is hope for the future.Our best to you for your CT, Ross n Jen
  • pink05
    pink05 Member Posts: 550
    #7
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    Hi Bean,

    Sounds like you've been through a lot, but you're still fighting!!! I'm sure there are some clinical trials out there that you may be able to try. I would also strongly recommend looking into the alternative route. You heard Scouty's story. She did it without chemo. You can too. I will be praying for you and for good CAT scan results. Let us know how everything goes.

    -Lee-
  • jennhws
    jennhws Member Posts: 8
    #8
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    same thing for me are you 5fu Iv or xeloda? i'm stage4 with lyms,liver,and lung.lungs a big problem right now.don't think there is much more out there.just pray that tommorrow's headlines include a cure.best wishes and GOD bless!.jennifer
  • jenalynet
    jenalynet Member Posts: 361 Member
    #9
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    Hi and welcome to the board, it is full of information which can be very helpful. I am Stage 4 and did have liver resection and am on Folfox 6. I don't have an answer for you but I will keep you in my thoughts and prayers.. Please keep a good strong attitude..Audrey
  • 2bhealed
    2bhealed Member Posts: 2,064 Member
    #10
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    hi bean!

    Welcome to the boards.

    I don't have any experience with your situation, but I'd be happy to share mine....

    I was Stage 3 lymph pos sigmoid colon cancer dx'ed when I was 39. I had surgery and was advised to have adjuvant chemo. I had no CEA so they would not have known if the chemo was working or not. My sister died 9 years previous to my dx (she was only 33--had been misdiagnosed for years so when they finally found the cancer it was so advanced). I saw what chemo and radiation did to her--and it surely didn't cure her and in the end it made her sicker and weaker. Her death is etched in my permanent memory. It was not pretty.

    Sorry, I digress......but anyway.....there are SO many other things that you can do besides chemo to help you heal from cancer.

    With colon cancer the diet is a good place to start. Colon cancer is 80% diet related so why not look into improving what you eat, if you haven't already.

    Cancer feeds on sugar so why feed it? It is advised to stay off of ALL WHITES: sugar, grains, flours etc.

    Next, substitute "dead food" with LIVE ENZYMES. That is from living foods, raw foods, fruits and veggies--fresh and organic!!

    The best and easiest way to get curing levels of live enzymes is from juicing them. (www.discountjuicers.com)(I have a Champion and love it). There is evidence that juicing can cure cancer. I have remained cancer free for 5 years having NEVER DONE CHEMO! My oncologist is psyched and HE believes juicing works too!!!

    Juicing is a safe way to get optimal nutrition quickly especially when one's health is compromised as in having cancer.

    You can read my web page on here for my complete story too (it sounds like I am selling something but I'm not). I just want people to know that there ARE alternatives to chemo and you can have HOPE!

    Here are some of my personal favorite books:

    A Cancer Battle Plan by Anne Frahm
    A Cancer Battle Plan Sourcebook by David Frahm

    Spontaneous Healing by Dr. Andrew Weil

    Prescription for Nutritional Healing by Balch and Balch

    When Hope NEver Dies by Marlene McKenna

    The Makers Diet by Dr. Jordan Rubin

    Anything by Charlotte Gerson-- her father is the Grandaddy of Juicing Cures--Max Gerson.

    I hope this helps in some way.

    peace, emily who still juices every day even after 5 years!! :-)

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