December 19, 2016 at 6:00 pm #74178positivityParticipant
A highly nutritious diet cannot hurt, but help anyone with this bad condition. I am trying to make sure my mom is eating more healthy foods, although she doesn’t have a big appetite. I figure she already has an awful intrahepatic tumor so what harm will nutrition do. She cannot have surgery or chemo, so there is no other option. I was trying the twice a day liver cleanser of Milk Thistle, do I know if it works? No, but it’s worth the try gain because she is not getting any treatment. We are just starting the journey of seeing oncologists and I know some I will not work with and hopefully one will give us more alternative therapies or a possible clinical trial. Lifestyle changes are critical such as stress reduction, nutrition, and not over exerting oneself. I also try to give her one cup of carrot juice daily and immune supplements.December 31, 2013 at 3:40 am #74177betzeegirlParticipant
VEry interesting–I agree with what your daughter discovered on the nutritional front. (My husband has ICC and I’ve been grappling with the nutritional end of things on his behalf.) Do you/your daughter have any thoughts about coffee? My husband drinks a pot per day, and I think it’s just acidifying his system. I’m wondering if you have any input on that. (Is green tea better?)
Audrey/BetzeegirlDecember 30, 2013 at 8:49 pm #74176willowParticipant
Thank you for bringing up this discussion. It seems obvious that good nutrition may not be a cure for cancer but it certainly can help give the body and immune system the ingredients it needs while minimizing stress on the liver. One problem is defining and agreeing in what is good nutrition and access to affordable organic foods. I almost keeled over yesterday comparing price of organic bell peppers to the regular ones grown in Mexico! Clearly, changes in food production and economy are needed.
As an aside, My sisters Dr said not to eat raw veggies/fruits when WBCs are too low though because immune system is already compromised and E. coli or other pathogens might cause a GI infection. (Maybe quick Par boiling is ok?).
Also, with regards to pH, I’m a little confused and skeptical..but never claim to be an expert in nutrition! Like LuAnn, I want to see scientific large scale studies. I’m intrigued and curious.. How do you test blood pH at home? As a dental hygienist, I just want to mention that one can’t test saliva and expect that’s equal to your blood pH. Some oral Bacteria (like strep mutans) in the mouth pump out strong acids as a product of metabolism (that’s how tooth decay happens). This happens in first half hour after eating so pH drops dramatically in the mouth but then neutralizes a bit. Everybody is different because we all have a unique biome/ecology of micro organisms living in our mouth, stomach and and lower digestive tract. Also, Stomach acids are normal and necessary part of digestion. Isn’t it true that dietary acids help absorption of some key nutrients? Ok, I’m just throwing out random thoughts now. Still, very good discussion, Everybody! My sister is trying to incorporate some of these nutritional practices Carl mentioned but is not adhering strictly (like you said, its hard to go cold turkey) and is not at all replacing traditional treatments.December 30, 2013 at 12:39 pm #74175
I would disagree with any oncologist who says “eat what you want”. In my opinion that is bad advice.
There is enough information out there to believe cancer feeds on sugars. I also believe our Western diet has too many chemicals (i.e. processed food) which causes our body to deal with too many toxins. That is bad for liver based diseases. This is not limited to cancer patients. It is why there is a big push to reduce these items from our standard diet.
And I believe in the notion of a ph balanced diet. If you eat something acidic, make sure you eat something with a high alkalinic content to neutralize the effects.
My daughter has done a tremendous amount of research on nutrition while dealing with cancer. I will list some of her “findings”. You don’t have to agree completely, but the premise behind each point has come from research on nutrition. This diet philosophy has to be a gradual change. The body has to stop its craving for the unhealthy foods we’ve been eating.
• Mainly vegetarian diet – all organic
• Absolutely no sugar
• No processed foods
• No hydrogenated oils or trans fats (use olive oil or coconut oil which is great for cooking and really healthy)
• No white bread or pasta
• Really limit dairy (only eat cottage cheese and plain yogurt – try Stonyfield)
• No soy products
• Limit salt intake (use Himalayan salt it has a large amount of beneficial minerals)
• Avoid pesticides and chemicals
• Limit use of microwave
pH value: Pay attention to the pH of your blood. You want to be on the alkaline (base) end of the spectrum as cancer cells cannot survive in a truly alkaline environment. On a normal daily basis, people should consume a diet that is 60% alkaline, 40% acidic. Those fighting cancer or another disease and trying to regain balance in their system should aim to consume 80% alkaline, 20% acidic.
Also, limit emotional stress as this causes your system to be acidic.
I will add a new post under Nutrition with more specific information.
CarlDecember 30, 2013 at 6:41 am #74174pcl1029Member
I believe to eat carefully whatever the patient wants ,more protein but much less meat with fat . More vegetable and fruits too.
I do believe patients of this disease should drink 8 glass of fluid ( 8 oz each) to have the minimum balance hydration to deal with the side effects of chemotherapy or targeted agents like diarrhea ,night sweat and electrolyte imbalance.also by doing so,less the chance of developing kidney problem.
With regard to PD-1/PDL-1 immunotherapy , actually there are four drugs under clinical trials now and I believe One of them will be on fast track approved in the second half of 2014, then doctor can use them off-label for CCA. If that is not fast enough, and if you qualify for TIL at NIH, everything will be pay for as one of our member did it in the past with one treatment and one year of stable response .
My personal thinking is that,if we, the patients, can hang around for 5 more years, there will be at least a much easy to tolerate regimen for us ,and if we are lucky and by the Grace of God,may be even a cure will not be out of the question.
God bless.December 30, 2013 at 3:02 am #74173luannParticipant
Thank you Marion.
I certainly agree with you that we must be very cautious about the use of this type of therapy. Every oncologist we’ve spoken with has suggested that LuAnn should eat whatever she likes, and that maintaining weight is crucial. The words are that: “weight is like money in the bank”.
My problem with the whole field is that science has not come up with suitable answers for ICC; hence my casting about for any and all anecdotal evidence from alternatives that might be helpful. Where they are not harmful, we will try them. For example, I picked 6 gallons of serviceberries, made a slurry of them to remove seeds, and froze “cookies” of them, one for each day until next year’s crop; this because someone suggested in an obscure article that serviceberries might be helpful. Same with eating asparagus daily.
In addition to Dr. Longo’s work, there are some studies going on with respect to short term starvation idea. Tanya B. Dorff, M.D. Assistant Professor of Medicine at the USC Keck School of Medicine is studying this idea. I was hoping someone on this forum could add to what is available from Longo and Dorff.
My background is in an entirely different field, and I know that acceptable scientific results depend on outcomes from different treatments with large sample sizes being preferred. I read that ICC is quite rare; approx. 1 in 100,000 cases in U.S.A per year. And these cases of ICC may be quite different from one another. I have concluded from my field of study that a sample may consist of items that are not quite the same, and the “scientific” conclusions reached from the statistics may be misleading. On the other hand, a careful detailed study of one specimen (case) may lead to very useful results from a sample of size one.
This forum may be the best possible place to gather these 3000 or so cases per year to discuss what is happening to each other and come to some sort of “scientific” result short of the controlled studies that the large drug companies like to run. For understandable financial reasons, I don’t think we can expect them to concentrate much on ICC. Much excitement in the cancer field with PD1 trials is in the literature; but we’ve found it impossible to participate.
For us, there simply is not time to wait until the science is in place.
Again, Marion, I thank you for your kind reply and look forward to hearing from others that may be able to shed additional light on this. Tomorrow, we go to see the oncologist and likely decide on the next course of chemo.
fbDecember 29, 2013 at 4:17 am #74172marionsModerator
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:
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.
MarionDecember 29, 2013 at 2:34 am #74171luannParticipant
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.
fbDecember 24, 2013 at 8:02 pm #74170jzMember
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.
JulieDecember 24, 2013 at 7:46 pm #74169
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,
CarlDecember 23, 2013 at 10:59 pm #74168
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.
-Randi-December 23, 2013 at 1:53 am #74167toongirlMember
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?August 5, 2013 at 5:43 pm #74166
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:
TRM009/ItemDetail?n=0August 5, 2013 at 4:00 pm #74165
This is a good article about a program at Duke University.
Another good website for nutrition and cancer is:August 5, 2013 at 12:45 am #74164
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 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!
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