August 4, 2013 at 6:25 am #74163gavinModerator
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,
And this from cancer research UK as well,
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,
PS – Lainy, glad to see my dropping by for a cuppa is rubbing off on you!!August 4, 2013 at 6:04 am #74162lisacraineParticipant
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.
LisaAugust 4, 2013 at 2:18 am #74161
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.
CarlAugust 4, 2013 at 2:15 am #74160
Ooops. I meant Lainy. SorryAugust 4, 2013 at 2:14 am #74159
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,
CarlAugust 4, 2013 at 1:54 am #74158
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.August 4, 2013 at 1:31 am #74157
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.August 4, 2013 at 1:06 am #74156
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.August 4, 2013 at 12:47 am #74155
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…..
CarlAugust 4, 2013 at 12:39 am #74154
Carl…Sloan Kettering offers a great site you might be interested in:August 4, 2013 at 12:16 am #74153
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.August 4, 2013 at 12:12 am #74152
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.
MarionAugust 3, 2013 at 11:59 pm #74151
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.
CarlAugust 3, 2013 at 10:46 pm #74150
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.
MarionAugust 3, 2013 at 9:55 pm #74149
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 ?
- You must be logged in to reply to this topic.