Re: The Impact of Nutrition

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.


Re: The Impact of Nutrition

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.

Please know that my personal opinion is not intended nor implied to be a substitute for professional medical advice. If  provided, information are for educational purposes.Consult doctor is a MUST for changing of treatment plans.

Re: The Impact of Nutrition

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.

Key Points:
•    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.


Re: The Impact of Nutrition

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.


Re: The Impact of Nutrition

Hi Scheitrumc/Carl,

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?)


Re: The Impact of Nutrition

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.