How to avoid recurrence?

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steven12
steven12 Member Posts: 51
edited March 2014 in Colorectal Cancer #1
After the surgery and adjuvant chemo/radiation has anybody got an instruction from the oncologist how to try to avoid recurrence? I had my dx: IIIc, surgery and adjuvant chemo, 8 months of Folfox4, more then 5 yrs ago. My oncologist, otherwise very respectable ( everybody is saying so ), didn't tell me anything what diet/supplements should I take to try avoid a recurrence. So it happened, after more then 3 years, I've got a recurrence. Latest CT showing 3 lesions, hardly operable: one close to pancreas, on left adrenal gland and a lymph node. My port taken out long time ago and I am now for the second time, since recurrence, on Xeliri ( Xeloda and Irinotecan ) regime. My question is because my onc doesn't show any sign that he is assuming diet or supplements as useful support in cancer treatment. He never ever asked me what my diet looks like or am I maybe talking any supplements. Because I see he is not interested I am just not willing to ask him about. Recently, I mentioned him about Vitamin D for what he said it's not proved with any trial that is beneficiary for cancer patients. I am really thinking to change my doctor. Has anybody have similar experiences with the oncologist?
Best wishes to everybody,
Steven

Comments

  • Patteee
    Patteee Member Posts: 945
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    ya know, I don't think I did
    ya know, I don't think I did get specific instructions to avoid a reoccurance. Is there such a thing? I have read about change in diet, specifically more fiber, no processed food, no red meat- these are changes I have made on my own from what I have read. Exercise is another thing- again, information I found on the Internet, nothing a doctor told me. Things like quitting smoking I have also read, but no doctor ever said anything, probably cause I don't smoke. The only thing they have pushed is the yearly colonscopy and CT scan and every 3 month appointment and CEA test.
  • dasspears
    dasspears Member Posts: 227
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    not enough proven info maybe?
    Although my onc did emphasize a diet of little red meat, more grains and fresh vegetables and fruits, he did not mention a supplement. From what I have heard and read, there is no conclusive evidence of how/why one gets cancer. Why can someone smoke 2 packs of cigarettes a day and not get lung cancer yet another person who is a non-smoker gets lung cancer? They know certain conditions like stress may exacerbate cancer hence the reason for eating healthy, moderate exercise, etc.

    It seems one week you hear that Vitamen E is a good antioxidant and then next week you year there is no evidence. Basically, I'm saying that I don't have an answer! So I do what I think is good for me.
  • mom_2_3
    mom_2_3 Member Posts: 953 Member
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    Steven,
    When I was first pronounced NED (Stage IV) 6 months ago I asked my oncologist what to do to avoid recurrence. She (a well-regarded and prominent colon cancer/liver oncologist) told me there were 2 things...weight and exercise. I don't have a weight issue so I concentrate on the exercise. I try and do at least 5 hours of intense aerobic exercise every day.

    Additionally, I have read about Vitamin D, aspirin, mushroom extract and curcumin. She is not opposed to any of these but has suggested that I wait until after my chemo ends (2 more rounds) at which point I intend to hit those pretty hard. She did tell my I could take 1000 mg Vitamin D (with calcium) per day right now.

    Finally, I have asked her about juicing (which I also do) and she is neither for nor against it. I drink about 20 oz fresh vegetable juice per day and I hope it's helping my immune system. I also try and go out into the sun at least 15 minutes per day with no sunscreen to get some sun on my arms and legs.
  • kristasplace
    kristasplace Member Posts: 957 Member
    Options
    Diet
    Hi Steven! There is a wealth of studies and proof that diet is EXTREMELY detrimental to the causes, prevention, and CURES for cancer. The reasons our doctors don't tell us about them is simply because there's no money in it, and if everyone cured their own cancer, they'd be out of a job. I have been reading everything i can on the subject, and the fact is, after doing six months of folfox myself, there is no evidence that it actually works!

    As there are certain foods that are anti-cancer, there are also foods that feed cancer. Ask your doctor how a PET scan finds cancer. Cancer lights up on PET scans as the area where the most glucose (sugar) is being consumed. Hmmmm. I'm wondering why my oncologist hasn't told me this? Couldn't i be helping to kill the cancer by avoiding foods that feed it?? If he knows this (which he must), he must know other foods to avoid?

    This isn't a new exploration for me, but i've never gotten this involved in it. The things i'm finding out (and like i said, there is a wealth of info out there), are making me sick to my stomach. My body is completely wrecked from their poisoning, burning, and cutting me up.

    There are people on this board who have cured their cancer using diet. It takes a lot of discipline, but it can't be harder than enduring traditional treatments. I am going to start slowly, and work my way up to 80/20 raw/vegan.

    Here is a couple useful websites: www.askdrsears.com
    www.pcrm.org

    I will be posting updates on my diet and resources for others who want to try.

    Hugs!
    Krista
  • PGLGreg
    PGLGreg Member Posts: 731
    Options
    Don't change.
    I don't think you should change your doctor for telling you the truth that no clinical trials have shown a benefit for vitamin D in preventing recurrence. There is epidemiological data and there are various experiments with suggestive results, but so far as I have read, no solid evidence that taking vitamin D, calcium, avoiding red meat, sugar, or whatever will prevent recurrence. Of the suggestive data out there, my favorites are calcium supplements, shown to reduce occurrence of polyps, and exercise (see here.).
  • shmurciakova
    shmurciakova Member Posts: 906 Member
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    mom_2_3 said:

    Steven,
    When I was first pronounced NED (Stage IV) 6 months ago I asked my oncologist what to do to avoid recurrence. She (a well-regarded and prominent colon cancer/liver oncologist) told me there were 2 things...weight and exercise. I don't have a weight issue so I concentrate on the exercise. I try and do at least 5 hours of intense aerobic exercise every day.

    Additionally, I have read about Vitamin D, aspirin, mushroom extract and curcumin. She is not opposed to any of these but has suggested that I wait until after my chemo ends (2 more rounds) at which point I intend to hit those pretty hard. She did tell my I could take 1000 mg Vitamin D (with calcium) per day right now.

    Finally, I have asked her about juicing (which I also do) and she is neither for nor against it. I drink about 20 oz fresh vegetable juice per day and I hope it's helping my immune system. I also try and go out into the sun at least 15 minutes per day with no sunscreen to get some sun on my arms and legs.

    5 hours?
    I thought I was the only one that crazy! I hike that much/day because it is my job. The only other time I do that much exercise is if I am climbing a mountain. What exactly do you do for that long each day? Just curious,
    You go girl!
    Susan H.
  • mom_2_3
    mom_2_3 Member Posts: 953 Member
    Options

    5 hours?
    I thought I was the only one that crazy! I hike that much/day because it is my job. The only other time I do that much exercise is if I am climbing a mountain. What exactly do you do for that long each day? Just curious,
    You go girl!
    Susan H.

    Oops
    Chemo brain!! I meant 5 hours intense aerobics a week. 5 hours a day would be nice though!!! I think cleaning the house and chasing the kids should count though! :)
  • tootsie1
    tootsie1 Member Posts: 5,044 Member
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    PGLGreg said:

    Don't change.
    I don't think you should change your doctor for telling you the truth that no clinical trials have shown a benefit for vitamin D in preventing recurrence. There is epidemiological data and there are various experiments with suggestive results, but so far as I have read, no solid evidence that taking vitamin D, calcium, avoiding red meat, sugar, or whatever will prevent recurrence. Of the suggestive data out there, my favorites are calcium supplements, shown to reduce occurrence of polyps, and exercise (see here.).

    Exercise
    My oncologist told me at my first visit that the number one thing I could do to prevent recurrence was to exercise daily.

    *hugs*
    Gail
  • dianetavegia
    dianetavegia Member Posts: 1,942 Member
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    Steven
    I've read loads on this. The studies were all done on Stage III colon cancer patients (not rectal or anal cancer).

    A: an aspirin a day
    B: Better diet with no red meat or limited to 4 ounces a month
    C: Calcium
    D: Vitamin D3 which is only found in a few foods. Note: this is NOT the Vit. D in One a Day, etc. It is in Centrum Ultra, etc.
    E: Exercise The Dana Farber Cancer Institute has done several studies which prove recurrence can be avoided at a rate of 55% in Stage III women who exercise regularly.


    ASPIRIN:
    CHICAGO – Score another win for the humble aspirin. A study suggests colon cancer patients who took the dirt-cheap wonder drug reduced their risk of death from the disease by nearly 30 percent.

    Aspirin already is recommended for preventing heart attacks and strokes, along with its traditional use for relief of minor aches and pains. Its merit in colon cancer prevention has been tempered by its side effects, bleeding from irritation of the stomach or intestines.

    The new study suggests patients who already have colon cancer may benefit from taking aspirin along with surgery and chemotherapy. In a separate analysis of a subgroup of patients, only those with the most common type of tumor, those that overproduce the Cox-2 enzyme, saw a benefit.

    "The paper is absolutely incredible, and I don't gush normally," said Dr. Alfred Neugut of Columbia University Medical Center in New York who has done similar research but was not involved in the new study. In an accompanying editorial, Neugut wrote that the study "comes as close as it can to offering patients a way to help themselves."..... MORE AT:
    CLICK HERE



    BETTER DIET: The Mediterranean Diet is believed (study being done at U of Mich) to raise survival rates from Colon Cancer by 6%. Mediterranean Diet HERE



    CALCIUM:
    Should Everyone Take Calcium and Vitamin D?
    Written by Heinz-Josef Lenz, MD.

    Only about five years ago, every patient of mine who finished chemotherapy was given a vitamin cocktail to further reduce colon cancer risk. It was calcium, selenium, vitamin E and folic acid.

    Over the last three years, folic acid has been shown to increase growth of polyps, and in patients with metastatic disease it may shorten life. The protective value of vitamin E has been questioned, and there was evidence that it might increase prostate cancer risk. Selenium did not show benefit.

    So we are down to calcium. This supplement has been shown repeatedly to benefit patients by reducing cancer risk for a variety of solid tumors including colon cancer. A recent publication by Dr. Yikyung Park from the National Cancer Institute showed that supplementation of 1200 mg calcium in women and men over the age of 50 decreased cancer risk by 17% for men and 23% for women (Archives of Internal Medicine, February 23, 2009). These were cancers of the gastrointestinal tract mainly colon cancers.

    The usually source for calcium in our diet is milk products (yogurt, cheese etc) as well as meat. The calcium pathway is very interesting because it requires activity of vitamin D. Without vitamin D it is difficult to absorb calcium and put it into the organs where we need it, but to make sure we have sufficient vitamin D we need some sun exposure (vitamin D is activated in the skin) and we need a functional kidney.

    When vitamin D was tested in patients with colon cancer it was found by Dr. Charles Fuchs in the Journal of Clinical Oncology published in June last year that the patients with the highest vitamin D levels lived longer suggesting that low levels may be associated with shorter survival. I recommend all my patients take 1500 mg of calcium and 1000-3000 units of vitamin D daily.

    If you have a history of kidney stones or inflammatory bowel disease please check with your doctor first before starting calcium supplements.


    D3: Watch this video on Vitamin D3 and cancer
    Watch the Youtube video HERE

    In a new study, researchers at the Moores Cancer Center and Department of Family and Preventive Medicine, UC San Diego used a complex computer prediction model to determine that intake of vitamin D...



    EXERCISE: Do a websearch for the Dana Farber Cancer Institute colon cancer exercise Using all those words should bring it right up. 55% is amazing!
  • jsabol
    jsabol Member Posts: 1,145 Member
    Options

    Steven
    I've read loads on this. The studies were all done on Stage III colon cancer patients (not rectal or anal cancer).

    A: an aspirin a day
    B: Better diet with no red meat or limited to 4 ounces a month
    C: Calcium
    D: Vitamin D3 which is only found in a few foods. Note: this is NOT the Vit. D in One a Day, etc. It is in Centrum Ultra, etc.
    E: Exercise The Dana Farber Cancer Institute has done several studies which prove recurrence can be avoided at a rate of 55% in Stage III women who exercise regularly.


    ASPIRIN:
    CHICAGO – Score another win for the humble aspirin. A study suggests colon cancer patients who took the dirt-cheap wonder drug reduced their risk of death from the disease by nearly 30 percent.

    Aspirin already is recommended for preventing heart attacks and strokes, along with its traditional use for relief of minor aches and pains. Its merit in colon cancer prevention has been tempered by its side effects, bleeding from irritation of the stomach or intestines.

    The new study suggests patients who already have colon cancer may benefit from taking aspirin along with surgery and chemotherapy. In a separate analysis of a subgroup of patients, only those with the most common type of tumor, those that overproduce the Cox-2 enzyme, saw a benefit.

    "The paper is absolutely incredible, and I don't gush normally," said Dr. Alfred Neugut of Columbia University Medical Center in New York who has done similar research but was not involved in the new study. In an accompanying editorial, Neugut wrote that the study "comes as close as it can to offering patients a way to help themselves."..... MORE AT:
    CLICK HERE



    BETTER DIET: The Mediterranean Diet is believed (study being done at U of Mich) to raise survival rates from Colon Cancer by 6%. Mediterranean Diet HERE



    CALCIUM:
    Should Everyone Take Calcium and Vitamin D?
    Written by Heinz-Josef Lenz, MD.

    Only about five years ago, every patient of mine who finished chemotherapy was given a vitamin cocktail to further reduce colon cancer risk. It was calcium, selenium, vitamin E and folic acid.

    Over the last three years, folic acid has been shown to increase growth of polyps, and in patients with metastatic disease it may shorten life. The protective value of vitamin E has been questioned, and there was evidence that it might increase prostate cancer risk. Selenium did not show benefit.

    So we are down to calcium. This supplement has been shown repeatedly to benefit patients by reducing cancer risk for a variety of solid tumors including colon cancer. A recent publication by Dr. Yikyung Park from the National Cancer Institute showed that supplementation of 1200 mg calcium in women and men over the age of 50 decreased cancer risk by 17% for men and 23% for women (Archives of Internal Medicine, February 23, 2009). These were cancers of the gastrointestinal tract mainly colon cancers.

    The usually source for calcium in our diet is milk products (yogurt, cheese etc) as well as meat. The calcium pathway is very interesting because it requires activity of vitamin D. Without vitamin D it is difficult to absorb calcium and put it into the organs where we need it, but to make sure we have sufficient vitamin D we need some sun exposure (vitamin D is activated in the skin) and we need a functional kidney.

    When vitamin D was tested in patients with colon cancer it was found by Dr. Charles Fuchs in the Journal of Clinical Oncology published in June last year that the patients with the highest vitamin D levels lived longer suggesting that low levels may be associated with shorter survival. I recommend all my patients take 1500 mg of calcium and 1000-3000 units of vitamin D daily.

    If you have a history of kidney stones or inflammatory bowel disease please check with your doctor first before starting calcium supplements.


    D3: Watch this video on Vitamin D3 and cancer
    Watch the Youtube video HERE

    In a new study, researchers at the Moores Cancer Center and Department of Family and Preventive Medicine, UC San Diego used a complex computer prediction model to determine that intake of vitamin D...



    EXERCISE: Do a websearch for the Dana Farber Cancer Institute colon cancer exercise Using all those words should bring it right up. 55% is amazing!

    thanks for this thread
    Steven,
    sorry that your onc was not helpful; I would certainly raise the question of what else you can do to treat and prevent recurrance.
    I am now over 5 years out from treatment for stage 3 colon cancer; I've had 3 oncs in the same practice. I switched from one because I found him to be very cheerful, but not very informative. My second onc moved to another city, but I loved the amount of info he could provide; his replacement has been very clear with me that exercise and avoiding wieght gain are important, that there is no good reason to eat red meat or processed meats (which are in many frozen foods as well as deli meats and sausage) and to maintain good bowel regularity through increased fruits, veggies and whole grains.
    By her report, the increased use of processed sugars and the impact on insulin production is being implicated in a number of adult health issues, often linked to obesity, but not so clearly to colon cancer.
    I'm relieved that my son is a vegetarian, my daughter is nearly so, and they are both taking the above advice and incorporating it into their healthy lifestyles.
    Thank you, Diane, for such a factual response.
    Steven, keep looking for the info you need to help manage this beast;
    best of luck to you.
    Judy
  • zhguo48
    zhguo48 Member Posts: 23
    Options
    common sense
    I follow my common sense eating healthy doing exercise, and rest well.The rest of it, I just leave it to my doctors and wish myself lucky. When it happens I try my best dealing with it:)

    faungg
  • nudgie
    nudgie Member Posts: 1,478 Member
    Options
    Here is my
    2 cents.

    I have been into exercise for 20+ years which consists of weight lifting, cardio and misc sports and I ate okay, about one meal a day and did not hydrate myself properly. I was DX in 06 with Stage II colon cancer with emergency surgery.

    I have come to the conclusion that it was my fault for getting cancer due to my poor diet (not eating enough) and poor body hydration. I even did a body building contest which brings your body fat down to 5%. Not really good for the body at all.

    My opinion is that everyone is made up differently (DNA) and no matter what we do (consume, exercise, etc) to our bodies, if it is in our DNA it will happen. You have Vegans that get cancer, GURU exercisers that get cancer and health nuts that get cancer and then you have people who smoke, drink, eat wrong and are over weight who never get cancer. Just too many variables.

    Do what YOU feel is right for you and your body and if you feel necessary, speak with your care team and doctors and get their input and sometimes you have to really look at your doctors and tell them you want their HONEST opinion and not their medical opinion.
  • steven12
    steven12 Member Posts: 51
    Options
    zhguo48 said:

    common sense
    I follow my common sense eating healthy doing exercise, and rest well.The rest of it, I just leave it to my doctors and wish myself lucky. When it happens I try my best dealing with it:)

    faungg

    Thank you for the replies
    Thanks everybody for the replies specially to "dianetavegia" for very informative post. After my adjuvant chemo I have actually already read most of these latest research results and had a plan how to try to avoid the recurrence. I was just expecting that my doctor will also suggest what should I do in that following period without any treatments just a regular checkups. He didn't tell me a single word, and that's about maybe the biggest question, for a NED patient!! Interestingly he doesn't seems to accept results of a research even if it is done by the most prominent scientific institutions. He seemingly relies only on the finished clinical trials and FDA approvals. If I were a doctor, oncologist, I would definitely follow also the researches done and if not directly recommend, at least mention these possibilities to my patients. Are they, for some reason, afraid to tell anything outside the "proven" way?
    Best wishes to everybody
    Steven
  • 2bhealed
    2bhealed Member Posts: 2,064 Member
    Options

    Diet
    Hi Steven! There is a wealth of studies and proof that diet is EXTREMELY detrimental to the causes, prevention, and CURES for cancer. The reasons our doctors don't tell us about them is simply because there's no money in it, and if everyone cured their own cancer, they'd be out of a job. I have been reading everything i can on the subject, and the fact is, after doing six months of folfox myself, there is no evidence that it actually works!

    As there are certain foods that are anti-cancer, there are also foods that feed cancer. Ask your doctor how a PET scan finds cancer. Cancer lights up on PET scans as the area where the most glucose (sugar) is being consumed. Hmmmm. I'm wondering why my oncologist hasn't told me this? Couldn't i be helping to kill the cancer by avoiding foods that feed it?? If he knows this (which he must), he must know other foods to avoid?

    This isn't a new exploration for me, but i've never gotten this involved in it. The things i'm finding out (and like i said, there is a wealth of info out there), are making me sick to my stomach. My body is completely wrecked from their poisoning, burning, and cutting me up.

    There are people on this board who have cured their cancer using diet. It takes a lot of discipline, but it can't be harder than enduring traditional treatments. I am going to start slowly, and work my way up to 80/20 raw/vegan.

    Here is a couple useful websites: www.askdrsears.com
    www.pcrm.org

    I will be posting updates on my diet and resources for others who want to try.

    Hugs!
    Krista

    Welcome the the club!
    Hi Krista!

    YEA! YOU GO GIRL.

    I had the added benefit of watching my sister 9 years before my dx, so when my time came it was a no-brainer for me.

    Have you ever read A Cancer Battle Plan by Anne Frahm?

    Thankfully my onc is totally on board with my choices of diet over chemo (bless him!).

    Keep me posted how you do.

    peace, emily
  • kristasplace
    kristasplace Member Posts: 957 Member
    Options
    2bhealed said:

    Welcome the the club!
    Hi Krista!

    YEA! YOU GO GIRL.

    I had the added benefit of watching my sister 9 years before my dx, so when my time came it was a no-brainer for me.

    Have you ever read A Cancer Battle Plan by Anne Frahm?

    Thankfully my onc is totally on board with my choices of diet over chemo (bless him!).

    Keep me posted how you do.

    peace, emily

    Thanks, Emily!
    I was hoping you'd check in! I'm going to want to learn from your experiences. There are a few people on the board who i think are interested in this subject, and i'm personally more than ready to cross-over to a new lifestyle that can rid my body of this mega beast, and possibly repair some of the damages already created by the treatments.

    I know your story, and it's very inspirational!

    Do you use probiotics, and are you completely raw/vegan? I have a probiotics thread going if you want to post your experiences with it there. I don't want to hi-jack Steven's thread! lol!

    Hugs!
    Krista
  • dianetavegia
    dianetavegia Member Posts: 1,942 Member
    Options
    nudgie said:

    Here is my
    2 cents.

    I have been into exercise for 20+ years which consists of weight lifting, cardio and misc sports and I ate okay, about one meal a day and did not hydrate myself properly. I was DX in 06 with Stage II colon cancer with emergency surgery.

    I have come to the conclusion that it was my fault for getting cancer due to my poor diet (not eating enough) and poor body hydration. I even did a body building contest which brings your body fat down to 5%. Not really good for the body at all.

    My opinion is that everyone is made up differently (DNA) and no matter what we do (consume, exercise, etc) to our bodies, if it is in our DNA it will happen. You have Vegans that get cancer, GURU exercisers that get cancer and health nuts that get cancer and then you have people who smoke, drink, eat wrong and are over weight who never get cancer. Just too many variables.

    Do what YOU feel is right for you and your body and if you feel necessary, speak with your care team and doctors and get their input and sometimes you have to really look at your doctors and tell them you want their HONEST opinion and not their medical opinion.

    Bumped for Laurie and her hubby
    Bump
  • p27449Atriss
    p27449Atriss Member Posts: 1
    Options
    Pancreatic Cancer Recurrence

    Sorry for the recurrence. My surgeon told me that after the tumor is formed, the metastasized cancer cells leave the tumor and get mutated somewhere in the body organs. The curative chemo that we take is to reduce the tumor before the surgery and to kill any floating cancer cell before and after the surgery. In my case I took 12 infusions before the surgery in order to be able to do the Whipple surgery. No Chemo after the surgery. Therefore, cancer recurrence after completing the curative Chemo and removing the tumor, is a matter of luck and it doesn't have much to do with diet. So far and according to my surgeon who has 56 research papers in the pancreatic cancer, there is no proven diets that an prevent recurrence. Just be moderate in your eating habits, exercise, and avoid emotional stress. Please let me know if you have any other information about avoiding pancreatic recurrence after the Whipple surgery.

     

     

     

     

  • NewHere
    NewHere Member Posts: 1,427 Member
    Options
    p27449Atriss

    This is a VERY old thread that had not been posted in for almost a decade.  Sorry you have to be in there forums for ANY of this.  It is a great place with great people, but we hate seeing anyone new have to come in for obvious reasons.

     

    Pancreas cancer seems to be in https://csn.cancer.org/forum/130 (rare and other cancers) though any diet or other information may apply to many of us.  Such as exercise being good for prevention/reoccurance/dealing with reoccurance