Survivors Please Help! 29 yo Rectal Cancer Patient

zirotra
zirotra Member Posts: 30
edited December 2011 in Colorectal Cancer #1
Hi,

I am 29. It started with IBS like symptoms in Dec 2010. Lot of stress before that. Lost my mother to HCV and Liver Cancer in April 2010, was married for 6 months (Jan - Jun 2010) and got separated in July 2010 and divorced in April 2011. Lot of emotional turmoil + diagnosis of cancer.

Cancer was low in rectum, and was staged as T 2-3 N0 M0. i visited mayoclinic and massachussets general hospital. Both surgeons advised APR w permanent colostomy as the best option for my age. I went with Mayo Clinic in arizona as they are local.

Jan - March 2011, i recd. neo adjuvant therapy with localized radiation treatment + Xeloda. CEA levels dropped from 69 to 2.5 before surgery. Surgery happened in May 2011. Took a lot of time to heal the surgical wounds in the abdomen and the area in buttocks where they took out the rectum and part of colon from. I was vegetarian for a year and eating chicken again helped heal faster. Surgery re-staged the cancer to T3 N1 M0.

I was on wound vac for nearly 4 months and finally got rid of it. But unfortunately Sept 2011 blood tests revealed that CEA slowly climbed back up to 31. This time PET scan revealed the Lymph nodes in the groin were swollen and there was small mass on Lung which was suspicious. They did Lymph node biopsy in the groin and tested positive for cancer and didn't touch the lungs. It was start of metastatis.

From October, i started receiving XELOX. 4 months post surgery was considered too late for Chemo, but Just completed the 3rd cycle and have been trying to eat right along with the treatment (no meats, no white sugar, no white rice, little wheat and gerson type juice diet).

I am just confused, healing is taking so much time, doctors were really positive about a good prognosis before surgery which gave me good hope about the line of treatment. Now they are saying "oh the cancer keeps coming back and you just have to keep taking chemo on and off".. This is ridiculous and I can't bear any additional session of chemo.

I am not sure if i would be able to live like this. I am looking into additional options

I am confused, should i follow Gerson, Should i follow Dr. Joe Brown in arizona, should i follow Tibetan herbal medicine, should i follow Homeopathic medicine with Chelidonium herb in it, or should i follow Dr. Burzynski in Houston? There are just too many POV and options out there and it seems that no one really knows how to treat cancer OR maybe everyone know how to treat cancer.

Are there experienced survivors out there who can give pointers to living a cancer free life? I went through a lot and am hoping that it stops. I want to lead a normal life with a new attitude of giving, building and teaching...

I need help and feel very low sometimes but i know proper action will help me get out of this crisis. Help Please.....!

Comments

  • Annabelle41415
    Annabelle41415 Member Posts: 6,742 Member
    Sorry
    So sorry that you have had a diagnosis. You have been through so much for such a young age. This is a hard journey to go through, but it can be done. I'm sorry, but can't help with the diet that you should follow, that needs to be a personal choice, but there are people on this board that have gone those routes and can give you more information. We are here to help you get through this and to help answer your question if we can. Please don't hesitate to ask anything, as all questions are relevant.

    Kim
  • Lilmiss82
    Lilmiss82 Member Posts: 257 Member

    Sorry
    So sorry that you have had a diagnosis. You have been through so much for such a young age. This is a hard journey to go through, but it can be done. I'm sorry, but can't help with the diet that you should follow, that needs to be a personal choice, but there are people on this board that have gone those routes and can give you more information. We are here to help you get through this and to help answer your question if we can. Please don't hesitate to ask anything, as all questions are relevant.

    Kim

    Hi
    I'm also 29 but I am a stage 4 rectal cancer survivor that is currently in treatment for reccurrance in my lungs. As far as diet and treatment I do both western medicine and I see a naturopath while trying to eat more fruit and veggies, staying away from all red meat and take supplements that my naturopath recommends. It works for me but not for everyone , because it's a personal choice. My advice is to follow your instinct and choose what you feel is right, so that 10 /20 years down the road you won't live in the coulda shoulda world:) if you need someone the talk to please feel free to PM me I've always felt alone in this process as there are not a lot of young people like you and I with colorectal cancer. Stay strong :) Melissa
  • pepebcn
    pepebcn Member Posts: 6,331 Member
    Lilmiss82 said:

    Hi
    I'm also 29 but I am a stage 4 rectal cancer survivor that is currently in treatment for reccurrance in my lungs. As far as diet and treatment I do both western medicine and I see a naturopath while trying to eat more fruit and veggies, staying away from all red meat and take supplements that my naturopath recommends. It works for me but not for everyone , because it's a personal choice. My advice is to follow your instinct and choose what you feel is right, so that 10 /20 years down the road you won't live in the coulda shoulda world:) if you need someone the talk to please feel free to PM me I've always felt alone in this process as there are not a lot of young people like you and I with colorectal cancer. Stay strong :) Melissa

    Hi just my solidarity but can't help you with alternative
    procedures , beside that, chemo can give you great results on your cancer and get free of it,l don't see any gold standard drug on your chemo yet so you got lots of chemos to choose with lots of possibilities of complete cure!
  • zirotra
    zirotra Member Posts: 30
    pepebcn said:

    Hi just my solidarity but can't help you with alternative
    procedures , beside that, chemo can give you great results on your cancer and get free of it,l don't see any gold standard drug on your chemo yet so you got lots of chemos to choose with lots of possibilities of complete cure!

    Thanks all for writing
    What Gold standard drugs are we talking about here? Right now I am on Oxaliplatin + Xeloda pills (alternative to 5 FU IV)....
  • Lovekitties
    Lovekitties Member Posts: 3,364 Member
    Hi
    So sorry that you have had such an emotional rollercoaster and now are having to deal with the cancer.

    First of all, I was told that taking in lots of protein would help with the healing process. Since you are 'no meat' you could do beans, peanut butter, Boost w/protein, etc.

    Second, I wish I did know of a cure that would eliminate any future recurrance for all with cancer. Unfortunately there is not a proven one for all. Some folks have had their own personal success with TCM - check out the expressions page for John23. Others have had personal success with juicing - do a search on here for juicing.

    Third, you might want to contact your local American Cancer Society to find a support group. You don't have to accept that you will have cancer forever, but you have to accept that until a full blown cure is found it is a possibility.

    Wishing you the best,

    Marie who loves kitties
  • relaxoutdoors08
    relaxoutdoors08 Member Posts: 521 Member
    More Chemo?????
    Zirotra,
    I am so sorry you have this recurrence. Please touch base with many of those on this board who were told chemo on and off for life but find that after chemo were eligible for surgery and NED. Please consider attending a Cancer Support Group. I met so many wonderful Cancer Survivors who were Stage 4. One colon cancer survivor finished Folfox, had breast cancer and treatment one year later, the next year lung cancer and chemo treatment and now 3 years NED. I am a believer and prayers for you as you continue your journey.
    NB
  • tootsie1
    tootsie1 Member Posts: 5,044 Member
    Sorry!
    I'm praying for you, dear.

    *hugs*
    Gail
  • tanstaafl
    tanstaafl Member Posts: 1,313 Member
    multipronged
    We layered our answers, with therapeutic nutrition and immunochemotherapy.

    Pre- and post surgically, we used lots of supplements, similar to LEF, both for surgical recovery including extra for wound healing, and long term to battle the cancer, sometimes even more than LEF.org cancer protocols.

    One problem is that for immunochemotherapy, Xeloda is the closest oral med to what we use, UFT (a generic not available in US-Canada), but cimetidine and PSK are not too hard to get in the US. Xeloda is incompatible with synthetic folates like folic acid in bread and multivitamins, and leucovorin. Natural folates, like in liver, are the healthy choice.
  • 2bhealed
    2bhealed Member Posts: 2,064 Member
    Combo platter
    Hello,

    Ten years ago I was dx'ed with Stage III lymph positive zero mets (was in lymph but did not travel beyond that we knew of) and was advised at the Mayo Clinic Rochester to do adjuvant chemo of 5-FU and leucovorin. I declined and instead, post surgery, embarked on an alternative path of juicing, TCM, Naturopathic medicine--a whole holistic approach that combined cancer healing modalities. I did some homeopathy but not enough to know if it did anything.

    The juicing/detox did wonders. My TCM practitioner was a real hands-on gal and I went for weekly sessions of counseling, massage, acupuncture, lymphatic drainage and aromatherapy. It was like going to a spa. I took chinese herbals, supplements, coffee enemas, exercised, did yoga, prayed, drank Essiac tea....you name it, I may have tried it. But juicing was the mainstay and I still juice daily even after 10 years.

    Oh, and I have remained cancer free with no recurrences for 10 years.

    One bit of info that I found to be imperative to my own well being is that gluten can cause intestinal/colon cancers so I am also gluten free--radically gluten free since my sister died from adenocarcinoma of the small intestine that she got in her 20's (died at 33). I had same cancer but different location in my 30s as well.

    I based my juicing protocol on The Gerson Method (book by Charlotte Gerson) but modified it to my own schedule, and ate a vegan/macrobiotic diet for 6 months in order to detox and heal my digestive system.

    I highly recommend researching this approach.

    I found these books helpful:

    Questioning Chemotherapy by Dr. Ralph Moss

    Beating Cancer with Nutrition by Patrick Quillin

    Spontaneous Healing by Dr. Andrew Weil

    Crazy Sexy Cancer Tips by Kris Carr

    A Cancer Battle Plan by Anne Frahm

    A Prescription for Nutritional Healing by Balch and Balch


    A Cancer Prevention Diet by Michio Kushi


    There are newer ones that I haven't read but this was what was available back then.

    Hope this helps so you can give, build, and teach as well. ;-)

    peace, emily

    ps. This book changed my life: Dangerous Grains by Dr. Braly
  • zirotra
    zirotra Member Posts: 30
    tanstaafl said:

    multipronged
    We layered our answers, with therapeutic nutrition and immunochemotherapy.

    Pre- and post surgically, we used lots of supplements, similar to LEF, both for surgical recovery including extra for wound healing, and long term to battle the cancer, sometimes even more than LEF.org cancer protocols.

    One problem is that for immunochemotherapy, Xeloda is the closest oral med to what we use, UFT (a generic not available in US-Canada), but cimetidine and PSK are not too hard to get in the US. Xeloda is incompatible with synthetic folates like folic acid in bread and multivitamins, and leucovorin. Natural folates, like in liver, are the healthy choice.

    folic acid
    interesting analysis. never had any discussion with my oncologist about folic acid. i guess my red blood cells and HB is all good along w the treatment with natural intake of fruits and vegetables, so it never came up.. WBC is something that is going down with each chemo cycle. wonder if there is a way to boost it!
  • zirotra
    zirotra Member Posts: 30
    2bhealed said:

    Combo platter
    Hello,

    Ten years ago I was dx'ed with Stage III lymph positive zero mets (was in lymph but did not travel beyond that we knew of) and was advised at the Mayo Clinic Rochester to do adjuvant chemo of 5-FU and leucovorin. I declined and instead, post surgery, embarked on an alternative path of juicing, TCM, Naturopathic medicine--a whole holistic approach that combined cancer healing modalities. I did some homeopathy but not enough to know if it did anything.

    The juicing/detox did wonders. My TCM practitioner was a real hands-on gal and I went for weekly sessions of counseling, massage, acupuncture, lymphatic drainage and aromatherapy. It was like going to a spa. I took chinese herbals, supplements, coffee enemas, exercised, did yoga, prayed, drank Essiac tea....you name it, I may have tried it. But juicing was the mainstay and I still juice daily even after 10 years.

    Oh, and I have remained cancer free with no recurrences for 10 years.

    One bit of info that I found to be imperative to my own well being is that gluten can cause intestinal/colon cancers so I am also gluten free--radically gluten free since my sister died from adenocarcinoma of the small intestine that she got in her 20's (died at 33). I had same cancer but different location in my 30s as well.

    I based my juicing protocol on The Gerson Method (book by Charlotte Gerson) but modified it to my own schedule, and ate a vegan/macrobiotic diet for 6 months in order to detox and heal my digestive system.

    I highly recommend researching this approach.

    I found these books helpful:

    Questioning Chemotherapy by Dr. Ralph Moss

    Beating Cancer with Nutrition by Patrick Quillin

    Spontaneous Healing by Dr. Andrew Weil

    Crazy Sexy Cancer Tips by Kris Carr

    A Cancer Battle Plan by Anne Frahm

    A Prescription for Nutritional Healing by Balch and Balch


    A Cancer Prevention Diet by Michio Kushi


    There are newer ones that I haven't read but this was what was available back then.

    Hope this helps so you can give, build, and teach as well. ;-)

    peace, emily

    ps. This book changed my life: Dangerous Grains by Dr. Braly

    Diet Changes
    Awesome commentary. lot of buzzwords too.. from research so far i think i am pretty close to macrobiotic diet and close to vegan except (with an exception of eggs) as veganism rips one off of B12 and eggs can be good source of B12. I am avoiding dairy, organic yogurt i feel is ok.. Made Whole Foods (Organic Marketplace) my kitchen supplier. Brown Rice, Cornmeal, Millet, oats, whole grain bread (not gluten free) is my substitute for white rice and wheat which i enjoyed as a staple being born and raised in India. Lentils and Beans is good when i get bored of all the veggies. Gerson veggies and juices (carrots, beets, green mix, green apples, ginger) is something i am enjoying very well. But i feel my intake is not sufficient as per Gerson's recommendation of 8-12 glasses).. I do a big mug in the whole day as these juices gives me much flatulence and hard to manage with a colostomy bag...! Its a big lifestyle change and there is much urgency and that's the only thing that i can control on a daily basis.. Hopefully the diet change will help..