Topic: The Impact of Nutrition

I am bringing this topic up for discussion purposes. I am curious as to everyone's view of the importance of nutrition in dealing with cholangiocarcinoma .
I am not sure I will even present this question the right way...but I'll try. How important is diet and nutrition in dealing with this disease?

When we found out my wife had ICC, like many of you, I quickly started researching this cancer as well as cancer in general. Fortunately for us, I found this site and now use it as my first source of information.

What we also learned was there was an incredible amount of information focused on the importance of nutrition. And just like the medical/oncology arena, there are so many and different views as to the effect of nutrition.

There is a view that suggests you can eat anything as long as you have protein and calories. There is an equal counter view that suggests eat only healthy, organic, non-processed foods. And much like the medicinal view, I believe there are advocates for each option.

Sorry this is long, but with that as background, I would truly like to understand what others have done to help their battle with this disease. For us, we have started to follow the program that suggests healthy, non-processed foods. That still leaves an incredible diet consisting of high value veggies and fruits, along with fish and chicken for protein. No red meat. No processed foods. No sugars except those found in fruits, etc.

We believe this change in diet has helped greatly. I feel that eliminating all processed foods (and their toxicity) has helped by reducing the body's effort to eliminate these toxins. i.e. reduce the activity of the liver so it can focus on dealing with chemo and cancer...and nothing more.

We have read and support the book:, Anti-cancer A new way of life, The cancer fighting kitchen, Healing the Gerson way (but not truly following that approach).

I (we) believe the change in nutrition is a factor in Lynn's improvement. I also believe medicine (chemo) is a factor. And believe attitude and desire is the most important factor. It is the combination of these three factors, not one alone, that makes the positive impact.

Thoughts?.

Carl

Re: The Impact of Nutrition

The initial post did not get a response. Probably too confusing. I'll try again in a brief question.....

Do others have comments on the impact/importance of nutrition in dealing with cholangiocarcinoma ?

Thanks.

Re: The Impact of Nutrition

Carl......although, many of the postings contain nutritional thoughts, this particular thread  'Nutrition' has not been able to evolve on this site.  But, you might just be the right person to make this happen for us.  I am looking forward to ongoing discussions on this subject.
Also, dear Carl, by entering "key words" in the search function, postings will appear pertaining to the subject matter.
Hugs,
Marion

THIS INFORMATION IS NOT INTENDED NOR IMPLIED TO BE A SUBSTITUTE FOR PROFESSIONAL MEDICAL ADVICE. YOU SHOULD ALWAYS SEEK THE ADVICE OF YOUR PHYSICIAN OR OTHER QUALIFIED HEALTH CARE PROVIDER

Re: The Impact of Nutrition

Marion,

Thanks for your response.

I am not an expert in nutrition by any means, nor am I a ready to bypass all medical approaches in lieu of a holistic approach. But I have read enough now to know that nutrition and diet is a factor even though you don't hear that directly from oncologists. I believe medicine and nutrition can work in concert.

When Lynn was diagnosed, we looked everywhere for help and guidance. The guidance on the medical side, as I believe many of us have found, is only that - guidance. With this disease, it seems each person is (at  least) slightly unique, i.e. what works for one may not even be a consideration for another. Adding to that, it seems each type of cholangiocarcinoma is different. Even with all the experience and knowledge of this community, there are few "standard" approaches.

I believe the body's natural ability to fight all diseases is being hampered by the poor diet - for many of us - in the United States. I have learned so much about the foods that promote natural immunity v. the foods that add toxicity and make the organs work harder.

In summary, for us, it will be a combination of diet (plus exercise) and standard treatments to fight Lynn's disease. As much research as I've done regarding chemo, radioembolization, targeted therapies, and immunology (and I am still naive), we have equally researched the benefits of food types, processed foods, etc. And just like there is no clear path regarding the medical options, there is no single plan regarding nutrition.

Chemo and radiation are not the answers but they do provide a way to extend time while better medical options become available. Nutrition and diet can also provide optimism and hope as they focus on our body's natural ability to develop immunity.

Hoping to hear from others.

Take care,
Carl

Re: The Impact of Nutrition

Carl...nicely said. I am in total agreement with you regarding the American diet and the lack of value placed on nutrition.  When first I came to this country, I was overwhelmed with the amount of processed food and the willingness of people to ingest non-pronounceable ingredients.  Add to it the vast amount of fertilizers used and the pesticides; one must wonder how many chemical the human body is able to process without causing great harm.
Like you I would love to see this thread grow with interesting thoughts and perspectives from many of our members.
Hugs,
Marion

THIS INFORMATION IS NOT INTENDED NOR IMPLIED TO BE A SUBSTITUTE FOR PROFESSIONAL MEDICAL ADVICE. YOU SHOULD ALWAYS SEEK THE ADVICE OF YOUR PHYSICIAN OR OTHER QUALIFIED HEALTH CARE PROVIDER

Re: The Impact of Nutrition

Hi Carl, good post although I have to say I am not a big believer. Limiting sugar, processed food and all the things you mentioned are wonderful and can't hurt but the big question is does it really help? I guess what turned me off is my Daughter's BF had Lymphoma and after oh 2 years and 50,000 paid to a Natural Pathic for IV's of Vitamin C, it returned after a year with a vengeance. No one has proven either way, ay or nay, if these alternatives really work. Again it can't hurt, but do inform the ONC of any changes you make. I used to eat the Deli Turkey and now I can't look at that or ham. It's disgusting. So, now I buy a rotisserie chicken, slice it and have that on toasted dark rye and I have come to love it. Just can't get myself to eat some of that other junk just by the way it looks. Good luck on your quest.

Teddy ~In our hearts forever~ATTITUDE is EVERYTHING
Any suggestion I offer is intended as friendly advice based solely on my own experience. Please consult your doctor for professional guidance.

Re: The Impact of Nutrition

Carl...Sloan Kettering offers a great site you might be interested in:

http://www.mskcc.org/cancer-care/integr … &op=Go
http://www.mskcc.org/cancer-care/integr … ducts-faqs
Hugs,
Marion

THIS INFORMATION IS NOT INTENDED NOR IMPLIED TO BE A SUBSTITUTE FOR PROFESSIONAL MEDICAL ADVICE. YOU SHOULD ALWAYS SEEK THE ADVICE OF YOUR PHYSICIAN OR OTHER QUALIFIED HEALTH CARE PROVIDER

Re: The Impact of Nutrition

Lainy my friend,

You are right on. There is no single evidence that nutrition alone is the answer. But you are supporting my belief that - much like chemo has become the only first course of action - it is not a cure. What I have learned and believe is this - nutrition is a factor which should not be ignored. I am not saying everyone should do coffee enemas (Gershan(?) - not my view), but I am saying the change in Lynn's diet has absolutely helped her progress. How do I know this?? Because there where only 2 data points - new diet and chemo. And we all know chemo's limited value whereas Lynn had significant improvement in her first scan.

I do not dislike doctors, pharma, etc...... Nor do I believe they have a single individuals BEST interest in mind. They are driven by profit - which is not a bad thing. But the small population of CC patients suggests that we cannot (I know I can't) wait for the medical world to find answers alone. We need to figure this out. Diet and Nutrition is in our control

I don't want the ability of my wife to respond to poison to be the method by which I help her. Chemo is horrible. If nutrition can reduce the chemo effects or help boost the immune system, then I am ALL IN.....

Take care,
Carl

Re: The Impact of Nutrition

You are right Carl, and you are a wonderful advocate for Lynn. You really made me laugh on the coffee bit. I won't ingest coffee upright let alone laying down! Never liked it.

Teddy ~In our hearts forever~ATTITUDE is EVERYTHING
Any suggestion I offer is intended as friendly advice based solely on my own experience. Please consult your doctor for professional guidance.

Re: The Impact of Nutrition

Oh dear.

I have a full pot every day as I read the paper and check Facebook (kidding on the FB).

Long story short, when I grew up I saw my father drink coffee all day long and vowed I'd never be like that. Of course, I now am my father. I can drink coffee all day long - even before water sadly.

Re: The Impact of Nutrition

Ha, Ha. I am a tea drinker, perhaps Gavin got to me! Isn't it funny how we do turn in to our parents? My daughter is so like me that we were told when we are together its like listening to a Stereo. Coming at you from both sides!  Come to think of it that is not much of a compliment! Oh well. Sometimes when I look into a mirror I see my Mom looking back at me. Wish I had their genes. Dad lived to be 93 and Mom 94. NEVER sick. Come to think of it, they ate pretty healthy for the olden days. Mmmmm  Now it comes to my mind they had no stress either. Stayed to themselves and never got involved in anything, that could be another factor the no stress thing. My Bro lives in Chattanooga TN and is 70. His whole adult life he has been very strict with himself. He has a stressful job as a partner in a CPA firm with 250 employees. His personal accounts are the likes of Mohawk Carpets and Andy Warhol Estate. Every day for breakfast he has a bowl of Cheerios and a cup of Coffee. Lunch is either tuna salad sandwich or turkey sandwich and dinner is chicken  breast or Chinese. No sugar at all. He does the treadmill 2 x a day and walks at night after work. Then last summer he almost died from a major artery clog. So who knows! Perhaps for him it is the stress. Guess we're damned if we do and damned if we don't.

Teddy ~In our hearts forever~ATTITUDE is EVERYTHING
Any suggestion I offer is intended as friendly advice based solely on my own experience. Please consult your doctor for professional guidance.

Re: The Impact of Nutrition

Gavin,

Lynn has been truly healthy for her entire life. If anyone should get this horrible disease, it should have been me. I eat hot chicken wings. I eat bad stuff. You should know that is past tense. I am now trying to eat healthy.

Just like chemo or other medicinal treatments, even 'healthy' food has classifications where its value has relevance. The changes we are making for protection against cholangiocarcinoma may have limited value elsewhere. But the more we do to fight this disease, the more we are convinced that nutrition plays a big role. Even if it is just us, we are ready to embark on this journey and will gladly update everyone with our progress.

Have a nice cup of "green" tea. It is very, very healthy...

Enjoy the weekend,
Carl

Re: The Impact of Nutrition

Ooops.  I meant Lainy. Sorry

Re: The Impact of Nutrition

Marions,

The links are good but they do not reflect the actual diet changes which can be made to affect change.

I will post information that reflects what we are doing and what changes in diet we have made.

Carl

Re: The Impact of Nutrition

Carl,
I green juice daily and we eat a mostly organic diet. We rarely eat meat or dairy so we eat tons of greens, veggies, fruits, beans and nuts. We started a 30 day detox and elimination diet about ten days ago to see if we can figure out why I have had chronic hives for over twenty weeks. The diet has been rough because it is so limited at this time but we do feel really good.
Lisa

This Information Is Not Intended Nor Implied To Be A Substitute For Professional Medical Advice. You Should Always Seek The Advice Of Your Physician Or Other Qualified Health Care Provider

Re: The Impact of Nutrition

Hi Carl,

Great thread here and I look forward to seeing how it goes, and contributing if I can. Here is a link from Macmillan about nutrition that may be of interest to you and Lynn,

http://www.macmillan.org.uk/Cancerinfor … gwell.aspx

And this from cancer research UK as well,

http://www.cancerresearchuk.org/cancer- … e-evidence

I too drink quite a bit of tea and coffee each day and then have a few of each decaf in the evening. And yes, Lainy is right, I love my tea! Just having my early morning one right now as I type this! A cuppa before breakfast here at my pc early on then another one with my toast for breakfast before getting on with the day. I can't be without my cuppa's each day!

I also changed my diet big time in January of this year and am still on that today and lost a ton of weight. Also feel a lot better, sleep better and have no fast food at all. Here in the UK, we are pretty much up there with you guys in the fast food stakes, diet etc. Chicken I love as well but not deep fried. My dad ate pretty healthy too, didn't smoke or drink a lot of alcohol and was pretty active as well when it came to exercise all his life. He didn't hit the gym or anything but did a lot of walking each day.

Time for another cuppa for me!

My best to you and Lynn,

Gavin

PS - Lainy, glad to see my dropping by for a cuppa is rubbing off on you!!

Any advice or comments I give are based on personal experiences and knowledge and are my opinions only, they are not to be substituted for professional medical advice. Please seek professional advice from a qualified doctor or medical professional.

Re: The Impact of Nutrition

Just to chime in on this thread...

When I was diagnosed with breast cancer I gave up drinking caffeinated coffee altogether, just decaf for me.  Then when I got CC I started seeing an acupuncturist who told me that she wanted me to do two things: stop drinking any kind of coffee and drink half my weight in ounces of water (that means if you weight 100 lbs, drink 50 oz of water a day).  She said that the coffee interferes with the energy pathways and water is just darn good for you!  (she  is also a urologist which could explain it).

My husband and I also gave up red meat and eat mostly fish, poultry and pasta.  I can't seem to give up my dairy though sad  I do have the occasional french fry...a girl has got to live! I try and eat lots of veggies and fruit, but don't always hit the mark I've set for myself.

Does it help me?  who knows but as my grandmother used to say..couldn't hurt!

-Randi-

Survivor of cholangiocarcinoma (2009), thyroid cancer (1999), and breast cancer (1994).

My comments, suggestions, and opinions are based only on my personal experience as a cancer survivor. Please consult a physician for professional guidance.

Re: The Impact of Nutrition

This is a good article about a program at Duke University. 

http://www.todaysdietitian.com/news/exclusive0813.shtml

Another good website for nutrition and cancer is:

http://www.cancerdietitian.com/

Survivor of cholangiocarcinoma (2009), thyroid cancer (1999), and breast cancer (1994).

My comments, suggestions, and opinions are based only on my personal experience as a cancer survivor. Please consult a physician for professional guidance.

Re: The Impact of Nutrition

Thanks Randi, and others,

I recently read some interesting material on nutrition and cancer that focused on ph level, the level of acidity (bad) v. alkaline (good) in killing off cancer cells. I will try to find the link. Basically it supports the findings over the past several years of the value of green veggies, fruits, and natural foods for improving everyone's health. It takes that further by explaining that cancer grows under low oxygen levels.

NOTE: As stated before, I am not downplaying current treatments but feel knowing more about the nutritional side is an important piece of taking more direct control of building immunity/protection for cancer.

We have read and do recommend a book "The Cancer Fighting Kitchen" by
Rebecca Katz, which talks about the value of nutrition and has a lot of recipes. A nutritionist recommended it to us.

We still eat chicken, fish and lots of fruits and veggies (I am slower than my wife and daughter to adapt fully) and use those foods which have been documented to add in the nutrition fight (e.g. Kale is now a daily staple whereas we never had it in the house before).



Here is one article (I'll try to post more).......

Otto Heinrich Warburg, with a doctorate of chemistry, and a second doctorate in medicine, was a physiologist and noted biochemist born in 1883 in Freiburg, Baden, Germany. Dr. Warburg won the Nobel Prize in Physiology or Medicine in 1931, and died in Berlin in 1970. He believed in eating organic.

Dr. Warburg was awarded the Nobel prize for his discovery that cancer is caused by weakened cell respiration due to lack of oxygen at the cellular level, and proving cancer thrives in anaerobic (without oxygen), or acidic, conditions. In other words, the main cause for cancer is acidity of the human body. In his Nobel Prize winning study, Dr. Warburg illustrated the environment of the cancer cell. According to Warburg, damaged cell respiration causes fermentation, resulting in low pH (acidity) at the cellular level. Warburg also wrote about oxygen's relationship to the pH of cancer cells internal environment. Since fermentation was a major metabolic pathway of cancer cells, Warburg reported that cancer cells maintain a lower pH, as low as 6.0, due to lactic acid production and elevated CO2. HE PROVED CANCER CANNOT GROW NOR DEVELOP IN BODY ALKALINITY OF 7.36. He firmly believed that there was a direct relationship between pH and oxygen. Higher pH means higher concentration of oxygen molecules while lower pH means lower concentrations of oxygen. A normal healthy cell undergoes an adverse change when it can no longer take in oxygen to convert glucose into energy. In the absence of oxygen, the cell reverts to a primal nutritional program to nourish itself by converting glucose through the process of fermentation. The lactic acid produced by fermentation lowers the cell pH (acid/alkaline balance) and destroys the ability of DNA and RNA to control cell division. The cancer cells then begin to multiply. The lactic acid simultaneously causes severe local pain as it destroys cell enzymes. Cancer appears as a rapidly growing external cell covering, with a core of dead cells.

Considering fats to be the main contributor to weight gain is a popular misconception that leads to massive confusion and explains why so many overweight people are not succeeding in losing weight. Many people would be shocked to find out that we may gain weight from eating cheese not only because it is rich in fat, but mostly due to its high acidic level. In response to high pH acid, the body creates fat cells to store the acid. Almonds have 70% fat, and pork has only 58%. However, pork has one of the highest acid values, -38, while almonds are alkaline forming, +3. Cucumbers and watermelons are so alkalizing that they can neutralize the acidifying effect of eating beef. This is why it is very important to know the pH index of all foods, showing the food's ability to alkalize the body. Please see the reference links to pH Food Indexes.

The so-called "bad" cholesterol, lipoprotein (LDL) is made by our own liver in order to bind the toxins and deactivate the acidic waste that came from certain food, not to cause arteriosclerosis (3).

Food, stress, mood, and music all alter our pH balance. Anything that is stimulating could leave an acidic residue in our body; any activities that are calming and relaxing could make us more alkaline. Dr. Coldwell believes 80+% of cancers are initiated by or caused by STRESS, which alters our pH balance, which makes us acidic.

A lack of education about dietary pH balance results in confusion among people who are trying to eat healthy and stay alkaline to lose weight and to avoid cancer. Test your pH with litmus paper and you will discover on days you eat leafy greens (kale, collards, Swiss chard, etc) you will be healthily alkaline; on the days you don't, you won't be alkaline, even if you're eating raw. Here is the pH test strip paper I use:
www.swansonvitamins.com/
TRM009/ItemDetail?n=0

Re: The Impact of Nutrition

I am just joining and somewhat surprised at the lack of discussion on this.  I have been so frustrated with my mother physicians about their approach and guidance on her nutrition.  She has basically been told she can have whatever she wants as long as she wants it. She has taken this as the doctors feel there is nothing more they can do, so why not enjoy. Luckily she has not taken this approach.  I have been pushing as hard as I can to get her diet in a better place.  She has cut out a lot of processed foods and gone more whole, also juicing a lot, and she says she feels better.  Also, exercise , which she hasn't really done in the past 20 years (she is 65)
I know there is so much to learn on this subject and how it can affect CC.  I am working to change my diet as well ( still like sugar)

Carl, you have obviously been researching a lot and hope to find out more.  Any more ideas?

Re: The Impact of Nutrition

I know your frustration.  Most doctors are just not up on nutrition, especially and unfortunately oncologists.  Mine just said to limit red meat to 1x to 2x per week and eat more vegetables and this was only after my chemo was done.  I did see a nutritionist while I was having treatment and one of things she stressed was to make sure you up your protein while having chemo, either through shakes or non-meat proteins (peanut butter, beans, etc.).

I stopped eating red meat altogether but still eat poultry and fish and the occasional pork (maybe 1x month). 

Your Mom's doctor may be hesitant to suggest limiting anything at a time when calories are important and finding foods that can be tolerated is difficult.

I would suggest that your Mom as her onc for a referral to a dietician if she wants to change her diet.

good luck
-Randi-

Survivor of cholangiocarcinoma (2009), thyroid cancer (1999), and breast cancer (1994).

My comments, suggestions, and opinions are based only on my personal experience as a cancer survivor. Please consult a physician for professional guidance.

Re: The Impact of Nutrition

Toongirl,

Sorry I just saw this. I will add more at another time, but I can tell you this. In our experience, changing your diet to counter the cancer is challenging, but also very rewarding. It does take a lot of research on the subject of nutrition and cancer.

You won't get this advice from the doctors. They've been trained on the side of medicine. They have limited foundation in the area of nutrition.

Cute sidebar however.....One time during our meetings with our oncologist we had good CT results. We talked about how we added cloves of garlic to Lynn's daily diet. Our oncologist smiled and said that we should "create a medical name" for it and publish a book. i.e. if the medical world isn't buying in to nutrition, make it a medical topic. The end of this story is that Lynn's medicine list at the doctor's office now includes garlic. Pretty cool.

My wife has completely transformed her diet to eliminate all processed foods - not just sugars. She and my daughter, who I give credit for continued research on this topic, have developed a diet regimen that consists mainly of  vegetables, fruits, beans (lots of spices for flavoring), fish and chicken. All organic. She is now eating 2500 calories/day, and everyone is a value added calorie. No red meat - too hard on the liver to deal with. Everything is based on nutrients and reduction of toxins to the liver.

There's lots more to the story, but I will tell you we believe the chemo helped ONLY as much as the modified diet. It was definitely the combination that provided her with the positive improvement.

And attitude accounted for 50% of the improvement.

I hope you have a Merry Christmas,
Carl

Re: The Impact of Nutrition

Carl and Toongirl,

Thanks for reviving this thread, I too would love to hear more of your experiences in nutrition.  We have been doing more research on this topic since my Dad was diagnosed with the disease, and it would be great to share the info.  I will post more later (holiday cooking a priority right now!) on our experience, but I'm really looking forward to sharing experiences and learning from you.

Merry Christmas!

Julie

Re: The Impact of Nutrition

The following written by husband, fb.
Diagnosed with ICC Feb 2013.  Eight cycles of chemo (gen / cis) took tumor marker CA 19-9 down from 2700 to the 600-700 range.  Then after chemo, back up to 2600.  Two renowned centers advised against surgery, but local surgeon believed he could help, and mid Nov 2013 right lobe was resected along with spots on left lobe.  Right lobe was mostly cancerous with hundreds of tumors and really ugly. This surgery occurred 6 weeks after right portal vein embolization to force left lobe to grow bigger.  Eight days in hospital to recover with remaining liver functioning normally.  One month later, back to hospital for 2 weeks to fight infection and drain fluid from above diaphragm.  Tumor marker post surgery was 67 and just recently down to 50.  Home two days before Christmas and weak but feeling good otherwise.  We thank God for the skill and courage of surgeon and all the hospital staff who provided care.  We believe we  are in the middle of a miracle from God and pray for that to continue.

Realistically, there are still cancer cells floating around; 4 of 12 lymph modes removed were positive.  Consequently, very interested in nutrition and have been generally adhering to dietary measures suggested here.  PET scans use a glucose solution with radioactive material that is gathered up by the cancer cells.  That tells us that cancer likes glucose.

Will likely follow-up soon with more chemo.  Any suggestions?  Have any of you been following the work of Dr. Valter Longo of southern California?  He suggests that 48 hours of starvation before chemo and also the day of chemo will act to protect normal cells from chemo, but the cancerous cells will stay exposed.  He postulates this will preferentially harm cancerous cells without so much harm to normal cells.  Can anyone provide insight or experience with this idea?

Best wishes to all.
fb

Re: The Impact of Nutrition

Hello LuAnn and fb.....welcome to our site. We are glad that you have found us.  I wish for continued recovery from the recent surgery and for these tumor markers to stay stable.  In regards to Professor Longo I pulled up the following PubMed publication:
http://www.ncbi.nlm.nih.gov/pubmed/22323820
Studies such as the one posted above need to be validated by clinical trials hence, I would read these things with great caution and await confirming data.  Be aware of the words "suggest" and "potentially", as it clearly states the unknown of preliminary lab results.  Certainly you would not want to engage in anything that could jeopardize your response to treatment.  You would definitely want to discuss it with the treating physician.

I am sure for others to chime in real soon. Although, we have no reports on fasting prior to the administration of chemotherapy someone out there may enlighten us. 
Tons of good wishes are heading your way.
Hugs,
Marion

THIS INFORMATION IS NOT INTENDED NOR IMPLIED TO BE A SUBSTITUTE FOR PROFESSIONAL MEDICAL ADVICE. YOU SHOULD ALWAYS SEEK THE ADVICE OF YOUR PHYSICIAN OR OTHER QUALIFIED HEALTH CARE PROVIDER