out of options?

dogter
dogter Member Posts: 3
edited March 2014 in Colorectal Cancer #1
My mother has been battling stageIV colon cancer for over 2 years now. After her colon resection the biopsy revealed it had gone through the colon wall. No nodes were involved so she was not offered chemo. A CAT scan later revealed a small spot in her liver that 2 months later became a 5cm mass. She started chemo Christmas eve 2003. She has been on
Irenotecan, 5_FU, leukovoran
Irenotecan, 5FU, Leukovoran, avastin
Oxaliplatin, Xeloda
Oxaliplatin, 5FU,Leukovoran
Erbitux, Irenotecan
Her tumor has recently gone fron 6cm to 9.8 on Erbitux. Her oncologist says we are out of options and wants to take her off chemo for a while and wait and see. I do not feel we are out of options there must be something more. Mom doesn't feel like waiting and seeing. Any suggestions or recommendations? Thanks so much,
Wendy

Comments

  • spongebob
    spongebob Member Posts: 2,565 Member
    #2
    Wendy -

    First let me say how lucky your mom is to have a daughter that is so concerned and cares so much about her health.

    Some of my own thoughts first and then I'll paste in some great advice from our dear Emily:

    1. Get a new oncologist or at least a couple more opinions. "We're out of options" and "Let's wait a while" are not acceptable answers. Remember the doctor is your CONSULTANT, not your boss (otherwise he'd be paying you instead of the other way around).

    2. Attitude isthe strongest tool in the cancer treatment arsenal. Keep you mom focused and centered.

    OK - more wisdom from Emily (I hope this isn't copywritten!)

    Since I didn't do any chemo for my Stage 3 colon cancer I cannot help you there, but I do use Alternatives to heal from my cancer so I can help you there!
    A little background: Stage 3 sigmoid colon cancer, successful resection 8/01. Have been cancer free for 4 1/2 years!! I opted out of any chemo and used Eastern Medicine instead--macrobiotic diet, acupuncture, massage, lymphatic drainage, Traditional Chinese Medicine and herbs, etc., and I had chiropractic adjustments too.
    The foundation of my diet was juicing. It revolves around ingesting the optimal amount of "live enzymes" with the least amount of work for your body. Juicing gets the nutrients into your system pronto! Live enzymes are key! So juicing veggies is really a great way to give you maximum nutrition. To that juice I added green powder (again, a fabulous way to optimize nutrients), flax seed (needed fiber easy for the body and full of cancer healing omega 3s), and protein powder.
    A good thing to remember:
    GREEN=LIFE
    I also drank Essiac Tea, took tons of supplements, medicinal mushrooms (maitake), did organic coffee enemas for detoxing, did body brushing to move the lymph system, made sure I exercised daily and added yoga to my life. This all would constitute "alternative" in the allopathic world.
    I second the recommendation for Quillin's book and to that I would add:
    The Maker's Diet by Dr. Jordan Rubin-- this is by far the best resource I have read on intestinal health. Although it doesn't address colon cancer per se, it sure gives fabulous info on why intestinal health is key to overall health. So many disease actually start in the colon.
    A Cancer Battle Plan by Anne Frahm--- this is a "I was sent home to die and discovered juicing and cured my cancer" story. Her husband wrote the companion book-- The Cancer Battle Plan Sourcebook by David Frahm -- this is the "how-to".
    When Hope Never Dies by Marlene McKenna -- this is "I was given 6 months to live and changed my diet and am alive today" story. She chose to go the macrobiotic route.
    The Cancer Prevention Diet by Michio Kushi-- this is a resource for macrobiotics and cancer.
    Two important things to know about cancer:
    It feeds on sugar and it cannot live in an alkaline body. Sugar creates an acid pH in your body which is ripe for cancer to grow. So balancing your pH is very important.
    For some sad sad reason diet "cures" remain in the realm of "alternatives" which makes no sense to me being that Colon Cancer is 80% dietary related. But no doctors I went to ever discussed diet improvements or explained any of this. Survivors learn quickly that we must become phD researchers and professional patient advocates in order to get needed cancer info. There is so much out there.
    A good website is www.cancerdecisions.com. Dr. Moss puts out a weekly newsletter that keeps us updated in all the latest cancer and chemo info. He also keeps on eye on CAM (Complementary and Alternative Medicine). I personally do not abide by "quackwatch" since they have an agenda that doesn't actually have our best interest at heart....it's more like they are protecting the interests of the megaconglomerate pharmaceutical companies.
    If you are looking into alternatives it is wise to seek the counsel of a Naturopathic Doctor who is schooled in nutrition for cancer. It can be quite confusing out there.
    Anyway....I hope this helps.
    peace, emily

    --------------------------------------------------
    Now - go get that Dragon and cut his head off!

    - SpongeBob
  • optimist
    optimist Member Posts: 51
    #3
    I am in a very similar situation. I have had stage 4 colon cancer since 5/04. I originally had two liver tumors that were resected only to come back. My tumors increased while I was on Erbitux and CPT11. My oncologist also said that I was out of options. However, she suggested that I just continue along and see what happens.

    With the advice of many people on this site, I took my case for three second opinions. I then found out that I was not out of options. There were other things that they could try.

    In my case, my new oncologists put me on Xeloda and oxaliplatin. I am going for tests this week to see how my tumors responded to two cycles of this treatment. If things aren't going well enough, I am going to get a hepatic pump.

    Seeing other oncologists, made me feel that my case was not hopeless. I wasn't ready to continue with the Erbitux and CPT 11 knowing that it wasn't working. It surprised me to see how other oncologists saw my case totally different.
  • shmurciakova
    shmurciakova Member Posts: 906 Member
    #4
    Why isn't surgery an option? It is possible to remove something like 75% of the liver and have it grow back just fine. I had a single liver met removed back in 2003 and have not had any other liver problems since then. I would ask to speak to a surgeon at a major cancer center.
    Another thought is that the liver met was probably there all along. I doubt it just popped up all of a sudden. In my case anyway, they believe it was there lurking at the time of my original diagnosis, just too small to see at that time.
    Good luck to you and your mother,
    Please seek a 2nd, 3rd opinion and if she has not been seen at a major center, I would highly recommend it.
  • JADot
    JADot Member Posts: 709 Member
    #5
    Dear Dogter:

    I second SpongeBob's sentiment - your Mom is so blessed with a caring, loving and most of all, resourceful daughter like you. You've come to the right place. This is the place where hope never dies and you're never out of options - both of which I regard as the first step to healing.

    I agree **wholehearted** with Spongebob and Emily on their suggestions re: nutrition. To their list of excellent suggestions I would add the following:

    Books
    1. Spontaneous Healing by Dr. Andrew Weil. It's a heart warming book with so many amazing stories of healing. This book gave me so much optimism! This is a must have. If you are only going to get one book, this is the one to get. This book will undo the doctor's stupid comment about out of options - it only shows his ineptitude. You must awaken the believe in healing in your Mom so she can go on fighting and winning the battle. There's no one better than Dr. Weil in build strong faith in our bodies' ability to heal.

    2. Beating Cancer with Nutrition by Patrick Quillin. This book is full of very important information on nutrition and supplements. Again, this is a must have so you know how to help your Mom with a world of choices.

    Nutrition and Supplements
    1. Please read the Sloan-Kettering web site which can be found at http://www.mskcc.org/mskcc/html/11571.cfm?RecordID=421&tab=HC. Find Ganoderma and Maitake in the list and read about their amazing cancer fighting abilities. Just last week there was a study from UCLA which showed that Ganoderma induced 21% -92% apoptosis, aka suicide of cancer cells in 5 lines of cancer. Without any side effects, I would call Ganoderma a miracle drug.


    2. Please read the sproutpeople web site at http://www.sproutpeople.com/docs/Broccoli.pdf to see a study by John Hopkins scientists on the amazing cancer fighting properties of brocolli sprouts.

    The truth is that there are so many options and so much data on real cures. Your Mom is in good hands - all you need to do is to tap into all of nature's healing power which unfortunately the MDs are so under informed on.

    Best of luck to you. Keep the faith and never ever give up!

    JADot
  • lfondots63
    lfondots63 Member Posts: 818 Member
    #6
    Hi dogter,

    I want to say "bravo" to all those that answered. I know that the first thing on this site that caught my eye after being dx was the positive attitude. Everyone needs this to keep going and fight the cancer. I am also trying the alternative treatments like Reishi extract, green powder, flaxseed oil pills and just like Emily, juicing. I have not seen an onc yet but I am positive I am going to beat this. If the onc doesn't have the right attitude to fit with mine in my fight against cancer, I will find another that does. It upsets me to think there are doctors that take all that money from us and then just give up. Your mother is lucky to have you to help support her and work on getting the right treatment for her. I am sending good vibes to you and her. Take care.

    Lisa
  • terril
    terril Member Posts: 296
    #7
    lfondots63 said:

    Hi dogter,

    I want to say "bravo" to all those that answered. I know that the first thing on this site that caught my eye after being dx was the positive attitude. Everyone needs this to keep going and fight the cancer. I am also trying the alternative treatments like Reishi extract, green powder, flaxseed oil pills and just like Emily, juicing. I have not seen an onc yet but I am positive I am going to beat this. If the onc doesn't have the right attitude to fit with mine in my fight against cancer, I will find another that does. It upsets me to think there are doctors that take all that money from us and then just give up. Your mother is lucky to have you to help support her and work on getting the right treatment for her. I am sending good vibes to you and her. Take care.

    Lisa

    Hi dogter,
    Keep going for other opinions. I really dislike it when doctors tell us we may as well give up. NEVER GIVE UP. My prayers and thoughts to you and your mom. Terri

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