I Don't Think This Is What They Meant

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TheLadySkye
TheLadySkye Member Posts: 203 Member

First and foremost, greetings friends!  It's been awhile since I posted here, but I've been lurking.  Between lack of energy, a concussion, and a bad cold and fever, I've just not been feeling the social.  But I think of you guys all the time  :)

I wanted to talk about diet for a minute...or specifically, a lack thereof.  When I was diagnosed and undergoing treatment, I was seen at two cancer centers - Memorial Sloan Kettering and Roswell Park.  I very pointedly asked what I should/shouldn't be eating...should I avoid sugar...red meat...take supplements...etc.  I was universally told to eat whatever I wanted/could tolerate.  I was universally told there was no proven link between particular foods or sugar and recurrence.  Obviously healthy moderation was a good idea, but that I should eat what I wanted.

Well during treatment that was less of an option.  I was on a low-residue diet for much of it and could not tolerate anything even remotely cold due to the oxaliplatin.  Needless to say, ice cream was off the table.  The low residue diet also ended up being ridiculously low in calories and the docs were not impressed with the subsequent weight loss (though my jeans sure were!). 

Now it's been a few months since active treatment has ended and I've returned to a more normal eating habit and ice cream is back on the menu.  In fact, probably way TOO much ice cream.  BECAUSE.I.CAN.  It's ridiculous.  I mean, I like ice cream, but not THAT much.  It's just that now that I can finally have it again without feeling like I swallowed a broken light bulb, I mentally feel like it's a, "Screw you, cancer!  Ice cream in your face!"  Or maybe it's a much darker acting out along the lines of, "If I'm going to die, I'm gonna eat the dang ice cream.  I mean, I don't think anyone ever died wishing they ate LESS ice cream..."

All of which is to say, I'm pretty sure ODing on ice cream isn't what the doctors had in mind.  I've been slowly trying to turn myself into making healthier choices and really focusing on what I'm eating instead of just eating whatever the heck I want at any given time.  But I'm wondering if any of you have found your diets changing considerably (for better or for worse) and what effect that has had and what works to keep you on track.  Also, has anybody else been told to just eat what you want, that it really doesn't matter much anyway?  I guess part of me is desperate to be able to DO something, and what I put in my mouth is SOMETHING, but apparently the docs aren't going to give me the easy out of telling me what that something should/shouldn't be. 

Thoughts and experiences?

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Comments

  • John212
    John212 Member Posts: 116 Member
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    On Diet

    While I was recovering from my surgery and before starting chemo, I sat down with a nutritionist in the Cancer Services department at my hospital. I told her I wanted to do whatever I could with diet to a) ensure that the chemo did its job, and b) help me tolerate the chemo as well as I could. We talked about my normal eating habits, and at the time I was on a binge of eating as much greasy, fatty food as I could get my hands on, thinking that once chemo started I might not want or be able to eat like that for a long time. She told me to go ahead and enjoy the fatty foods for another week or so before the treatments began, but she said that such foods would probably make chemo more difficult than it needed to be.

    She talked about risk factors for colorectal cancer, especially red meat, and about the kinds of foods that can help people tolerate chemo treatments better. She strongly advocated that I reduce the amount of animal protein in my diet, based on research by biochemists specializing in nutrition. One book she recommended was The China Study, by Dr. T. Colin Campbell. She also said it was probably unrealistic to expect me to switch over to a vegan diet but that I might want to cut back by reducing the number of meals where half or more of the calories came from animal products. I did that, for the most part, and I had almost no problems tolerating the chemo treatments. I lost about 15% of my body weight during treatment, and have since gained back about a third of that to a just-over-ideal weight. At the start of treatment, I was about 25 or 30 pounds overweight.

    I still try to eat a few meals each week that contain little or no animal protein, but ice cream is one of my weaknesses. Like you, I craved ice cream during treatment but the cold was simply too much to handle. 

    I know there are almost as many opinions on "the right diet" as there are people. I do know that when I stay mostly off meat and processed foods, my glucose levels, cholesterol levels, and weight drop down where they belong.

  • hippiechicks
    hippiechicks Member Posts: 509 Member
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    Funny ... I went on a real

    Funny ... I went on a real ice cream binge also!! It wasn't only on Folfox either!! There must be something to chemo and ice cream!!

    Anyhow, I was told the same .. no red meat but once a week.  Try to boost the veggies and cut out processed foods.  I have done most of that .. but do sometimes slip on red meat and may have it twice, and try not to eat processed as much as possible.  I just don't go down those isles in the store any longer.  

    As far as sugar, I have been told that your body will just make it from something else if you starve your body of it .. so I just eat less of it.  I really just try to be more mindful of being healthy without being crazy over it.  I am sure that my cancer was genetic and not caused by food necessarily, but being healthy and cutting out the known connections and being happy is my choice. 

  • Easyflip
    Easyflip Member Posts: 588 Member
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    My wife is vegan

    but I am not but I did ramp up the fruits and veggies and cut back on red meat and sugar. My blood pressure dropped to a very healthy level and I feel better. I figure for whatever reason I got cancer and if I wanted to prevent a recurrence it would be silly not to change the conditions in my body that fostered it in the first place, makes sense right? I take a bunch of supplements too. I know for a fact I changed my vitamin D level from a 30 to a 51 in 6 months with my new regimen. That might be enough to keep cancer away! I don't know but neither does anyone else! Cimetadine, mushroom, turmeric, aspirin, etc etc follow your gut, CBD? Who knows! Alkaline water? Who knows?!? Eat healthy and exercise is what my gut tells me, my gut does tell me binging on ice cream is probably not that great physically and psychologically feels a little 'f u cancer take that' but my gut tells me revenge eating is probably not a good road to go down for very long! My two cents is deep down you know what you need to do to feel like you fought an honorable and good fight. Do that and even if it goes south you won't have regrets that you didnt fight hard enough. I wish the best for all of us in outcome and if not that a peaceful and love filled end. Eat better, less processed, less sugar, you know you should : ) my opinion!

    Easyflip/Richard

  • Lovekitties
    Lovekitties Member Posts: 3,364 Member
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    Moderation in all

    When my sister was on chemo, the doctors said the same about eating whatever she wanted.  The reason was that she needed the calories  They even susggested Ensure with ice cream to make a milk shake.  She had stage 4 uterine cancer so did not have the oxi issue.

    For myself, I had lost weight and appitite before diagnosis.  The doctor told me that after surgery, I would regain appitite, and I did.

    I think that some of my eating habits now, and from the sounds of it yours, are kind of a mental thing...whether it be "what the heck difference" or " I deserve the treat".  I too have found ice cream a favorite food.  I will not buy it in large containers, but in single serving or snack sizes so that it is really a treat rather than a binge.  I also limit how much I buy on any grocery run...never enough to have one a day.

    Each person must do what they feel is right for them as far as eating habits.  Yet we must all remember that sugar, carbs and fat in excess can also contribute to other life threatening issues...diabetis, heart disease, stroke, etc.

    Best of luck in finding the right mix for you.

    Marie who loves kitties

     

  • peterz54
    peterz54 Member Posts: 341
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    Consistently Inconsistent - Physicians and diet

     

    Here is a talk on diet and cancer given by a Dr. Champ, a young oncologist who took the time to research the literature on the issue of how diet affects cancer growth and patient outcome.

    I recommend the entire talk, but on the issue of how useless it is to solicite advice from your physicians listen to his remarks starting at about 4:30.

    https://www.youtube.com/watch?v=ot96y5-D_K0

    The key point he and a few other researchers in this area make is that it is very plausible that diet can affect some of the same signaling pathways which promote cancer growth.    These pathways are promoted by excess insulin which in turn is affected by too much glucose or glucose spikes whch leads back to the danger of consuming simple carbs if one already has cancer.    

     

    Peter

     

     PS   Here is Dr. Fine's talk.   He discusses cancer drugs, targeted pathways, and insulin's impact on these pathways from about 10m to 15m. 

    https://www.youtube.com/watch?v=04A5U6IlHqk

     

     

  • jen2012
    jen2012 Member Posts: 1,607 Member
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    peterz54 said:

    Consistently Inconsistent - Physicians and diet

     

    Here is a talk on diet and cancer given by a Dr. Champ, a young oncologist who took the time to research the literature on the issue of how diet affects cancer growth and patient outcome.

    I recommend the entire talk, but on the issue of how useless it is to solicite advice from your physicians listen to his remarks starting at about 4:30.

    https://www.youtube.com/watch?v=ot96y5-D_K0

    The key point he and a few other researchers in this area make is that it is very plausible that diet can affect some of the same signaling pathways which promote cancer growth.    These pathways are promoted by excess insulin which in turn is affected by too much glucose or glucose spikes whch leads back to the danger of consuming simple carbs if one already has cancer.    

     

    Peter

     

     PS   Here is Dr. Fine's talk.   He discusses cancer drugs, targeted pathways, and insulin's impact on these pathways from about 10m to 15m. 

    https://www.youtube.com/watch?v=04A5U6IlHqk

     

     

    Thanks for sharing the links

    Thanks for sharing the links Peter.  Have to find an hour to watch, but I have read his website and watched part of the video.   ladies, dr. Champ is adorable and easy to watch and listen to and has some interesting thoughts.  Life would be so much easier if all docs were on the same page with what is good or bad.

    strange but my sister ate loads of ice cream during treatment for lymphoma too.

  • Randy33
    Randy33 Member Posts: 69 Member
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    Low Carb Mediterranian

    After chemo had gotten rid of my tumours, I asked my onc what I needed to do to prevent recurreance. He didn't know. So I researched what diets and supplements were effective against cancer. I learned that cancer loves sugar so I cut out sugar and most carbs. Also fruits and vegetables have nutrients that fight cancer so I stared eating a bunch of them. I also learned that green tea and tumerric were also good to have and red meat is probably not a good idea. So what I ended up on was a low carb Mediterranian diet. I also researched supplements and found the following to be good against cancer: aspirin, fish oil, resveratrol, curcumin, multi-vitamin, vitamin D3, grape seed extract, and Co-Q10. I also excercise alot and avoid stress. So far its been working. I am Stage 4 and 6 years NED. 

  • TheLadySkye
    TheLadySkye Member Posts: 203 Member
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    Thank you all so much for

    Thank you all so much for your feedback and experiences.  I'm finding that while I am hugely grateful that so far so good post-chemo, I REALLY wish there was a lot more support for what to do next both in terms of nutrition, mental health, physical changes, what to expect and dealing with the new normal and...well, all sorts of things really.  I guess I just feel like unless there's a needle to be stuck in my arm or radiation to blast at me for a scan, the rest of my care I'm just on my own.  Which, not to sound overly needy, but I'm finding out I'm not very well equipped to plan, execute, AND evaluate those steps.  And it seems like a pretty big ball to drop, ya know?

  • Buddy2013
    Buddy2013 Member Posts: 17 Member
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    peterz54 said:

    Consistently Inconsistent - Physicians and diet

     

    Here is a talk on diet and cancer given by a Dr. Champ, a young oncologist who took the time to research the literature on the issue of how diet affects cancer growth and patient outcome.

    I recommend the entire talk, but on the issue of how useless it is to solicite advice from your physicians listen to his remarks starting at about 4:30.

    https://www.youtube.com/watch?v=ot96y5-D_K0

    The key point he and a few other researchers in this area make is that it is very plausible that diet can affect some of the same signaling pathways which promote cancer growth.    These pathways are promoted by excess insulin which in turn is affected by too much glucose or glucose spikes whch leads back to the danger of consuming simple carbs if one already has cancer.    

     

    Peter

     

     PS   Here is Dr. Fine's talk.   He discusses cancer drugs, targeted pathways, and insulin's impact on these pathways from about 10m to 15m. 

    https://www.youtube.com/watch?v=04A5U6IlHqk

     

     

    So true

    These are excellent videos. Thank you for posting these.  

  • UncleBuddy
    UncleBuddy Member Posts: 1,019 Member
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    Thank you all so much for

    Thank you all so much for your feedback and experiences.  I'm finding that while I am hugely grateful that so far so good post-chemo, I REALLY wish there was a lot more support for what to do next both in terms of nutrition, mental health, physical changes, what to expect and dealing with the new normal and...well, all sorts of things really.  I guess I just feel like unless there's a needle to be stuck in my arm or radiation to blast at me for a scan, the rest of my care I'm just on my own.  Which, not to sound overly needy, but I'm finding out I'm not very well equipped to plan, execute, AND evaluate those steps.  And it seems like a pretty big ball to drop, ya know?

    My brother's oncologist has him on a low sodium diet because of fluid build-up he had around the heart. They told him "everything in moderation," so he has been losing weight on the chemo, but he is eating to keep the calories going. He is overweight anyway, but the docs want him to keep up his strength. He's stage 4, and when I discussed good eating habits with his oncologist, she just said he should try to eat healthy, but he needs to enjoy his life, so cheating sometimes is okay. Every doctor is different. Aside from monitoring his salt intake, I let him eat what he likes. I don't know how much time he has left, so I feel let him enjoy life!

    Lin

  • Steve444
    Steve444 Member Posts: 105 Member
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    Thank you all so much for

    Thank you all so much for your feedback and experiences.  I'm finding that while I am hugely grateful that so far so good post-chemo, I REALLY wish there was a lot more support for what to do next both in terms of nutrition, mental health, physical changes, what to expect and dealing with the new normal and...well, all sorts of things really.  I guess I just feel like unless there's a needle to be stuck in my arm or radiation to blast at me for a scan, the rest of my care I'm just on my own.  Which, not to sound overly needy, but I'm finding out I'm not very well equipped to plan, execute, AND evaluate those steps.  And it seems like a pretty big ball to drop, ya know?

    It's tough

    It's tough because nutrition and cancer seems to be based mainly on varying opinions rather than proven long term scientific studies.

    When first diagnosed I read a lot and heard opinions from friends, family, doctors, nutritionists, web sites, etc...  I initially started eating more raw foods and dropped out processed foods (once I finally got an appetite after a fast downward spiral and loss of 60 lbs).  From juicing to blending fruits and veggies to eating the whole foods based on checklists of foods listed in books on web sites of being anti-cancerous.  Various herbs and supplements that someone at a local organic store swore worked for her friend who skipped chemo.  It's funny how some people are pro natural foods and of the mindset that doctors are stupid and want to poison you for money.  Some doctors are of the mindset that natural medicine is foo foo bogus.  I tend to like the rational mixture of both.

    Anyway, then I went on the advice of those who say sugar feeds tumors and moved to cut out sugars including those from fruit.  I forgot what the diet was called (ketogenic I believe ), but it was no sugar, limited protein (since it supposedly converts to glucose as well), more healthy fats.  My doctor wasn't too impressed with that and hooked me up with the cancer center nutritionist who went with the more green veggies, some fruit, limited proteins.  They were under the impression that people thought glucose fed tumors because glucose is used in pet scans and gets to tumors.  I don't recall their argument of why they believed it was false pseudo science, partially that glucose is required for healthy cells as well and brain function.

    i eventually was NED and of course had no way of knowing if it was chemo, diet, meditation, or a combination of everything.  The holidays came and I took a break from chemo and healthy diet.  I'm still on break, am 15 lbs heavier but am still NED as far as I know.  I'm just now getting back to eating healthier, in hopes of shedding the gained pounds, cutting back out the pub and ice cream and burgers.  My meal of choice seems to be a wrap with lots of lettuce, fresh tomatoes and spicy pickles from my garden, avocado, turkey and cheese - or without the wrap in salad form.  It's tasty to me and not terribly unhealthy...

    As usual, a long winded reply to say it's tough because there are so many different camps who think the other sides are crazy...  :). I just try to do what feels right to me and stay away from the for profit diet extremes.  I have however dabbled in a lot of them.

  • Tom0827
    Tom0827 Member Posts: 1
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    Food Cravings

    Thanks for your post! I was also told, "Eat what you want." (I was extremely lucky—I went to the hospital with peritonitis and during the surgery, the surgeon happened to notice a Stage II tumor on my colon, lymph nodes all negative.) In the hospital, where the food was pretty decent, I nevertheless developed an obsession for watermelon. My surgery was six months ago, I've recovered completely, and since I was Stage II, chemo was not recommended. But I still eat watermelon at least twice a week!

    The strange thing is, I lost my taste for most chocolate.

  • Trubrit
    Trubrit Member Posts: 5,800 Member
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    Tom0827 said:

    Food Cravings

    Thanks for your post! I was also told, "Eat what you want." (I was extremely lucky—I went to the hospital with peritonitis and during the surgery, the surgeon happened to notice a Stage II tumor on my colon, lymph nodes all negative.) In the hospital, where the food was pretty decent, I nevertheless developed an obsession for watermelon. My surgery was six months ago, I've recovered completely, and since I was Stage II, chemo was not recommended. But I still eat watermelon at least twice a week!

    The strange thing is, I lost my taste for most chocolate.

    Hello Tom

    I am so sorry that you lost you taste for chocolate, and I'm sorry about the Cancer as well. 

    Why don't you start a brand new thread and introduce yourself. We'd love to get to know you. 

    Trubrit

  • pilarica
    pilarica Member Posts: 44 Member
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    Trubrit said:

    Hello Tom

    I am so sorry that you lost you taste for chocolate, and I'm sorry about the Cancer as well. 

    Why don't you start a brand new thread and introduce yourself. We'd love to get to know you. 

    Trubrit

    Diet

     

    Good morning!!! Can you tell I just chemo and the steroids keep me awake? Oh well we do the best we can to keep the good thoughts and optimism, keep fighting!

    The day that conventional and holistic medicine merge it will be sooooo much better, both have great contributions to health.

    My oldest son graduated from medical school one month before I was diagnoses 2013. He is doing his residency at Johns Hopiks.He tells me that at medical school the get only 1 semester of nutrition, which in my opinion is not enough. 

    I went to see and integrative medicin oncologist last week in NY, I spent 3 hours with him.

    1.He talked about meditation. We did 20 mins. of it, it felt really good. He also said to do yoga (which I have been doing for 10 years) or tai chi as well as aerobic exersices when possible. This is to keep stress in control.

    2.- He also talked and gave me literature about certain supplements, Like: Vitamin D3, Turmeric, Red berries, garlic, blackseed cummin, ALA for the neurophaty and a bunch of mushrooms to boost the inmune system.

    3.- He said to cut refined sugar and white carbs, white pasta white rice etc. Ok to have honey, or real maple syrup.

    4.0 Not to eat tuna or sword fish becuae of mercury content.

    5.0 Very little red meat or none (if I chose to eat red meat preferably organic, no pestisides etc.)

    6.0 To cook with coconut oil, grapeseed oil or butter, other oils when heated make toxins that are not good for anybody.

    7 use olive oil in salds etc. not for cooking.

    8. Serve your plate with 70% vegetables and the rest proteins and carbs.

    TRY ORGANIC WHEN POSSIBLE

    9.- Have a vegetalbe + fruit juice or smoothie in the morning.

    Healthy eating helps your inmune system which is KEY for all of us. A good inmune system helps talerate better the treatments and fight this $$^%$%^ cancer.

     

    Sooo today I had chemo and also saw my oncologist. I asked if I we could add vitamin D into my intravenous cocktails Embarassed ! She said that it is on trail, that has been aproved for lung cancer, as it is not aproved for colon cancer yet so she couldn't give it to me. I said can I get it with a 3rd party, she said "go for it " she also said she is in favor of supplemets etc. 

    This is a problem that many doctors face  if they work for the big institution, they have to abide by the book of protocols that the hospital is in charge, so they can't go out of the box.......

    I posted an interesting article on a new post, it is quite interesting if you have a chance read it, it is quite interesting 5 min read.

    All the best and sorry for the long post.

    xoxo

    Pilar

     

     

  • Trubrit
    Trubrit Member Posts: 5,800 Member
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    pilarica said:

    Diet

     

    Good morning!!! Can you tell I just chemo and the steroids keep me awake? Oh well we do the best we can to keep the good thoughts and optimism, keep fighting!

    The day that conventional and holistic medicine merge it will be sooooo much better, both have great contributions to health.

    My oldest son graduated from medical school one month before I was diagnoses 2013. He is doing his residency at Johns Hopiks.He tells me that at medical school the get only 1 semester of nutrition, which in my opinion is not enough. 

    I went to see and integrative medicin oncologist last week in NY, I spent 3 hours with him.

    1.He talked about meditation. We did 20 mins. of it, it felt really good. He also said to do yoga (which I have been doing for 10 years) or tai chi as well as aerobic exersices when possible. This is to keep stress in control.

    2.- He also talked and gave me literature about certain supplements, Like: Vitamin D3, Turmeric, Red berries, garlic, blackseed cummin, ALA for the neurophaty and a bunch of mushrooms to boost the inmune system.

    3.- He said to cut refined sugar and white carbs, white pasta white rice etc. Ok to have honey, or real maple syrup.

    4.0 Not to eat tuna or sword fish becuae of mercury content.

    5.0 Very little red meat or none (if I chose to eat red meat preferably organic, no pestisides etc.)

    6.0 To cook with coconut oil, grapeseed oil or butter, other oils when heated make toxins that are not good for anybody.

    7 use olive oil in salds etc. not for cooking.

    8. Serve your plate with 70% vegetables and the rest proteins and carbs.

    TRY ORGANIC WHEN POSSIBLE

    9.- Have a vegetalbe + fruit juice or smoothie in the morning.

    Healthy eating helps your inmune system which is KEY for all of us. A good inmune system helps talerate better the treatments and fight this $$^%$%^ cancer.

     

    Sooo today I had chemo and also saw my oncologist. I asked if I we could add vitamin D into my intravenous cocktails Embarassed ! She said that it is on trail, that has been aproved for lung cancer, as it is not aproved for colon cancer yet so she couldn't give it to me. I said can I get it with a 3rd party, she said "go for it " she also said she is in favor of supplemets etc. 

    This is a problem that many doctors face  if they work for the big institution, they have to abide by the book of protocols that the hospital is in charge, so they can't go out of the box.......

    I posted an interesting article on a new post, it is quite interesting if you have a chance read it, it is quite interesting 5 min read.

    All the best and sorry for the long post.

    xoxo

    Pilar

     

     

    Thank you, Pila

    For such a wonderful detailed post, and for sharing the list your nutritionist gave you. 

    I must try to cut down on the refined sugar and white carbs, both of which I like too much. 

    Sue - Trubrit

  • NewHere
    NewHere Member Posts: 1,427 Member
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    pilarica said:

    Diet

     

    Good morning!!! Can you tell I just chemo and the steroids keep me awake? Oh well we do the best we can to keep the good thoughts and optimism, keep fighting!

    The day that conventional and holistic medicine merge it will be sooooo much better, both have great contributions to health.

    My oldest son graduated from medical school one month before I was diagnoses 2013. He is doing his residency at Johns Hopiks.He tells me that at medical school the get only 1 semester of nutrition, which in my opinion is not enough. 

    I went to see and integrative medicin oncologist last week in NY, I spent 3 hours with him.

    1.He talked about meditation. We did 20 mins. of it, it felt really good. He also said to do yoga (which I have been doing for 10 years) or tai chi as well as aerobic exersices when possible. This is to keep stress in control.

    2.- He also talked and gave me literature about certain supplements, Like: Vitamin D3, Turmeric, Red berries, garlic, blackseed cummin, ALA for the neurophaty and a bunch of mushrooms to boost the inmune system.

    3.- He said to cut refined sugar and white carbs, white pasta white rice etc. Ok to have honey, or real maple syrup.

    4.0 Not to eat tuna or sword fish becuae of mercury content.

    5.0 Very little red meat or none (if I chose to eat red meat preferably organic, no pestisides etc.)

    6.0 To cook with coconut oil, grapeseed oil or butter, other oils when heated make toxins that are not good for anybody.

    7 use olive oil in salds etc. not for cooking.

    8. Serve your plate with 70% vegetables and the rest proteins and carbs.

    TRY ORGANIC WHEN POSSIBLE

    9.- Have a vegetalbe + fruit juice or smoothie in the morning.

    Healthy eating helps your inmune system which is KEY for all of us. A good inmune system helps talerate better the treatments and fight this $$^%$%^ cancer.

     

    Sooo today I had chemo and also saw my oncologist. I asked if I we could add vitamin D into my intravenous cocktails Embarassed ! She said that it is on trail, that has been aproved for lung cancer, as it is not aproved for colon cancer yet so she couldn't give it to me. I said can I get it with a 3rd party, she said "go for it " she also said she is in favor of supplemets etc. 

    This is a problem that many doctors face  if they work for the big institution, they have to abide by the book of protocols that the hospital is in charge, so they can't go out of the box.......

    I posted an interesting article on a new post, it is quite interesting if you have a chance read it, it is quite interesting 5 min read.

    All the best and sorry for the long post.

    xoxo

    Pilar

     

     

    I Am Looking For Someone Like That

    I am going to Sloan and have a great Onc.  Also going to check into naturopaths and other options.  Sounds like you found a good one?  Perhaps I should check them out.

  • danker
    danker Member Posts: 1,276 Member
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    NewHere said:

    I Am Looking For Someone Like That

    I am going to Sloan and have a great Onc.  Also going to check into naturopaths and other options.  Sounds like you found a good one?  Perhaps I should check them out.

    Future

    As you face various tests, just assume that all will be the best ressult ever.  Then  while waiting for resultsis, should eliminate all anxiety.

    Good luck to you! may you be NED soon and forever!!

  • herdizziness
    herdizziness Member Posts: 3,624 Member
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    After 5 years of chemo and three rounds of Oxiplatinum

    I have done experimentations.  The greatest experiment that has worked for me was drinking ice water and holding on to two small iced water bottles as long as I could stand the cold in my hands.

    Drinking ice water before, during and after infusion has allowed me to continue drinking ice water all day everyday including day of chemo day after etc., before I had to actually warm up room temperature water in order not to feel that ice shards feeling in my throat when drinking.  I began to hate hot apple cider, cocoa, tea and coffee because all I wanted was a cold drink and was denied it.  It first was five days before I could drink something cold, then it extended to ten miserable days.

    Then this time, I thought about what my oncologist had told me, that chemo hates the cold and if I could keep my hands and feet in ice water during the chemo, I wouldn't have the neuropathy that goes hand in hand with the Oxi.  I looked on the net and they do sell hand and feet gloves that do this, keep your hands cold, and in another oncology unit (I forget what country) they now have a cold hat system that keeps the chemo away from your head and stops the hair loss.  So, I thought to myself if wearing cold stuff keeps the Oxi away from the cold area, would drinking ice water keep it from my throat.  And while I was scared to try it, it was a darn miracle to me.  I drink it all the way through infusion with no troubles, but you have to keep drinking every few minutes, to keep the throat cold I order for it to work.

    I hold the two small iced water bottles as long as I can in my hands, this has allowed me to hold cold things, like cold yogurt etc., (which is another nice thing about drinking the ice water effect, is I can eat cold things and ice cream without worry or waiting) I still get the tingling and nueropothy because I waited to try the ice cold water bottles because well, they are so darn cold to hold!  But at least I can hold on to cold things and reach in my refrigerator and get what I want.  And it's nice to be able to eat cold cereal with cold milk without the worry of feeling ice schards.

    http://youtu.be/G7d6WYI0Hd0

    That is my YouTube of how I drink the ice water

  • NewHere
    NewHere Member Posts: 1,427 Member
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    After 5 years of chemo and three rounds of Oxiplatinum

    I have done experimentations.  The greatest experiment that has worked for me was drinking ice water and holding on to two small iced water bottles as long as I could stand the cold in my hands.

    Drinking ice water before, during and after infusion has allowed me to continue drinking ice water all day everyday including day of chemo day after etc., before I had to actually warm up room temperature water in order not to feel that ice shards feeling in my throat when drinking.  I began to hate hot apple cider, cocoa, tea and coffee because all I wanted was a cold drink and was denied it.  It first was five days before I could drink something cold, then it extended to ten miserable days.

    Then this time, I thought about what my oncologist had told me, that chemo hates the cold and if I could keep my hands and feet in ice water during the chemo, I wouldn't have the neuropathy that goes hand in hand with the Oxi.  I looked on the net and they do sell hand and feet gloves that do this, keep your hands cold, and in another oncology unit (I forget what country) they now have a cold hat system that keeps the chemo away from your head and stops the hair loss.  So, I thought to myself if wearing cold stuff keeps the Oxi away from the cold area, would drinking ice water keep it from my throat.  And while I was scared to try it, it was a darn miracle to me.  I drink it all the way through infusion with no troubles, but you have to keep drinking every few minutes, to keep the throat cold I order for it to work.

    I hold the two small iced water bottles as long as I can in my hands, this has allowed me to hold cold things, like cold yogurt etc., (which is another nice thing about drinking the ice water effect, is I can eat cold things and ice cream without worry or waiting) I still get the tingling and nueropothy because I waited to try the ice cold water bottles because well, they are so darn cold to hold!  But at least I can hold on to cold things and reach in my refrigerator and get what I want.  And it's nice to be able to eat cold cereal with cold milk without the worry of feeling ice schards.

    http://youtu.be/G7d6WYI0Hd0

    That is my YouTube of how I drink the ice water

    Some Issue On Using Cold?

    EDIT:  For some reason this got posted here, thought I was replying to the other one. 

  • NewHere
    NewHere Member Posts: 1,427 Member
    Options

    After 5 years of chemo and three rounds of Oxiplatinum

    I have done experimentations.  The greatest experiment that has worked for me was drinking ice water and holding on to two small iced water bottles as long as I could stand the cold in my hands.

    Drinking ice water before, during and after infusion has allowed me to continue drinking ice water all day everyday including day of chemo day after etc., before I had to actually warm up room temperature water in order not to feel that ice shards feeling in my throat when drinking.  I began to hate hot apple cider, cocoa, tea and coffee because all I wanted was a cold drink and was denied it.  It first was five days before I could drink something cold, then it extended to ten miserable days.

    Then this time, I thought about what my oncologist had told me, that chemo hates the cold and if I could keep my hands and feet in ice water during the chemo, I wouldn't have the neuropathy that goes hand in hand with the Oxi.  I looked on the net and they do sell hand and feet gloves that do this, keep your hands cold, and in another oncology unit (I forget what country) they now have a cold hat system that keeps the chemo away from your head and stops the hair loss.  So, I thought to myself if wearing cold stuff keeps the Oxi away from the cold area, would drinking ice water keep it from my throat.  And while I was scared to try it, it was a darn miracle to me.  I drink it all the way through infusion with no troubles, but you have to keep drinking every few minutes, to keep the throat cold I order for it to work.

    I hold the two small iced water bottles as long as I can in my hands, this has allowed me to hold cold things, like cold yogurt etc., (which is another nice thing about drinking the ice water effect, is I can eat cold things and ice cream without worry or waiting) I still get the tingling and nueropothy because I waited to try the ice cold water bottles because well, they are so darn cold to hold!  But at least I can hold on to cold things and reach in my refrigerator and get what I want.  And it's nice to be able to eat cold cereal with cold milk without the worry of feeling ice schards.

    http://youtu.be/G7d6WYI0Hd0

    That is my YouTube of how I drink the ice water

    Some Issues On Using Cold?

    Again, and I was replying in the other thread

     

     I was looking into this after it was mentioned here as a way to avoid the neuropathy and other issues.  My initial reaction was "cool" (no pun intended) but then if the ice water keeps it away from areas, is that defeating the purpose?  (I was thinking if I swallow the cold water, would it stop chemo from getting to places where I need it, though I am guessing it would be warm enough by the time it hit my digestive track.)

    I bought the general concept up, but was told are questions as to whether this reduces the effectiveness of chemo.  Particularly I was told there was indication that brain mets looked to be more prevalent in breast cancer patients who used the head cooler. The general recommendation was that better safe than sorry until more studies come in.  Who knows, could be dependent on the cancer.  It seems we would tend more to lungs and liver from things said here and the risk of mets for us in the areas that are kept cold is relatively low, more so when compared to the risk of permanant neuropathay.

    I have not really gone into a great deal of research and the conversation I had was brief, but figured I would put that out there.