Welcome to the new Cancer Survivors Network website! Existing members can click HERE to review the changes and new features on CSN.

advice

alta29
alta29 Member Posts: 435
edited March 2014 in Colorectal Cancer #1
Hi !
Like I mentioned last week my Pet and Ct came back NED. ( wwwwwweeeeee ) Today I had my Dr. appt. This is what she told me....if you ask me if u are cured I will have to say NO..that u are in remission ( which i know ) We will see u every 12 ( !!!!! ???? ) weeks.,thats it ! ohhhh and that i should know that i will go through this again....( well chances are that... )Very positive Dr. right ????? Well besides planning to change Dr. I wanted to know if u guys that are in remission have your appt. every 3 months. I think is a long period !!!!and some of u mentioned that you guys are getting some medication while on remission ...??? I'm going to start with my vitamins, tons of water and fruits, but I have a question about sugar...when u guys say no sugar, are u talkking about granulated sugar or everything that contains sugar ( like chocolate, cakes etc )
Thanks again !
Ileana

Comments

  • spongebob
    spongebob Member Posts: 2,565
    Ileana -

    First - congrats for being NED!!!

    Every three months for blood tests is normal - not for PET Scans or CT Scans. An annual scope is also normal.

    Regarding sugar: Some here will say to stay from it entirely. I attenuatethat a bit myself, I stay away from refined sugar and high fructose corn syrup (which, by the way is in just about EVERYTHING, from french fries to yoghurt to bread to spaghetti sauce - READ THE LABEL. That also goes for chocolate, pies, cakes, twinkies, ho-hos, etc.

    I preach moderation - not deprivation.

    A great diet to look at is "The Abs Diet" by David Zinzencho (sp?). In that book he describes the "Power 12" which is a great way to eat - it is less of a diet and more of a lifestyle change. You ABSOLUTELY MUST think of it in those terms. You'll lose weight, but more importantly, you'll be feeding your body what it needs (Uh... it doesn't REALLY need a lot of chocolate or steak to keep going - although, if you change your lifestyle, you can afford either every now and again!)

    Listen - you're in remission - and you will be for 5 years before you are "cured" - some of us will never be "cured"! Don't worry about the label on your condition - enjoy how you feel!!

    Cheers!

    - SpongeBob
  • HowardJ
    HowardJ Member Posts: 474
    Hi lleana,
    Congratulations on NED!! The guidelines say every 3-6 months for the first few years, for follow-up visits (I go every 4 months). See:
    http://www.asco.org/ac/1,1003,_12-002214-00_18-008034-00_19-008039-00_20-003,00.asp?ArticleId=8034&ArticleBodyId=8039&ShowHead=&PageNo=1&cancer_type_id=&state=
    for follow up guideline recommendations. I try to eat more veggies, fruits, and grains these days. As for the sugar...I'm in the moderation camp on that one.
    Howard
  • mikew42
    mikew42 Member Posts: 114
    Congrats on NED. I am doing a PET and CAT scan every three months for the first year as part of a study, so its paid for. That includes bloodwork. After that it will be every six months for the next year for scans, but three months for bloodwork. I'm not sure of the schedule after that. Mike
  • 2bhealed
    2bhealed Member Posts: 2,064
    Hi Ileana,

    That is fabulous news!!! Don't you just love NED??

    I sit here and for the life of me can't remember if I saw my onc every three months at the beginning or not (4 years out here). I know I DID see him every six months for the first couple years and now see him every year.

    Personally I do not use the term remission. It's just a name game for me. Remission implies that it it will come back and this NED is just a temporary condition. So I tell myself that for today I am cured. Why not? There is no evidence of disease so I take the positive approach. (knowing full well that it could sneak back at any time).

    The sugar question: I think when people talk about moderation it becomes a relative thing. For one person drinking a six pack would be moderate drinking if that person is used to drinking a case. So it's very subjective. If someone is used to eating sugar all day long then having only 2 pops and a piece of cake and some M&Ms and some fast food may seem moderate. To me I would be in a sugar coma!! If we know that sugar feeds our cancer (it's an insulin thing) then WHY bother feeding the cancer????? I just don't get that kind of thinking at all. It never fails to surprise me that folks dealing with intestinal cancer want to gamble with their health over a poison like sugar.

    Deprivation? Find alternatives. I dunno. Call me radical but I would rather not eat junk with NO food value than be deprived of my LIFE!!

    It's a choice.

    You see, there is so much that we can be doing to be proactive in curing our cancer. You've said you're going to do it too! that's great! You can take control over the things that you have control---like what you feed your cells with--is it going to be organic veggies that are KNOWN to prevent cancer or is it gonna be refined sugary junk food that do nothing for your health what so ever??

    Ok, let's say you want to combine the two and call it moderation. That's like filling up your Porsche with part gasoline and part rubbing alcohol. You are putting something into that tank but one is going to make that Porsche run like it should and one is going to gum up the works and will make it kaput!

    As for chocolate.....it actually has anti-oxidants so try organic unsweetened (fair trade) cocoa to get your fix or grain sweetened. Shop your local co-op. There are alternatives--just be creative.

    Anyway, that is really great about your NED!!

    peace, emily
  • HisJoy
    HisJoy Member Posts: 113
    YEAAAA on the NED!!!

    On the sugar: I'm afraid I'm in the maniacal camp on the question. There is NO positive nutritional value in eating refined sugar AT ALL. This means NO white sugar OR anything that contains white sugar or high fructose corn syrup. White flour is just as bad! Our insulin systems were never designed to have this load of crap pumped into us. It overloads the insulin system and sets all other hormonal systems out of balance PERIOD, as well as making your body a comfortable environment for cancer. Refined sugar and flour are bad for your cholesterol levels, bad for your heart, bad for your liver, bad for blood glucose levels, and simply plain old BAD for you.

    Learn to eat fresh fruits for the natural sugars in them and maybe a little milk or dairy products for the natural lactose. There ARE some tasty yogurt products out there that are sweetened with Splenda, like Blue Bunny's Lite 85, and those are GOOD. Avoid cereal, even the whole wheat kind, that is full of sugar. I DO occasionally eat BROWN sugar on my oatmeal, but NONE of the refined stuff. Eat ONLY 100% whole grain products like Cheerios, oatmeal, shredded wheat, and breads or pastas marked 100% whole wheat. "Mixed grain" and "wheat bread" doesn't cut it, because they still contain white flour. Read the labels! The sugar content has to be clearly marked in the product nutrition information, but then also check the ingredients for flour, sugar, or corn syrup. If you can begin avoiding the white sugar and flour for even one month, you'll find that you don't crave it any longer and that you feel much more energetic.

    Joyfully,
    BB
  • nanuk
    nanuk Member Posts: 1,358
    lleana: Check out an old, but still relevant book called "Sugar Blues" ..You will never look at sugar the same way again.. Bud