Pico de Orizaba

Pico de Orizaba
Taken from Huatusco, Veracruz, the closest town to Margarita's family's ranch.

Monday, September 8, 2014

Responses to "Epigenetics and FAP/Gardners Syndrome" on the Facebook FAP groups

Tracy wrote: I do agree that a change from the "modern" diet could change the growth rate of polyps. The foods you mentioned cause inflammation, the drugs used to reduce the growth of polyps is Sulindac and Celebrex, which reduce inflammation. It makes sense, however it's difficult for many to change your lifestyle.

My Response: As for Sulindac, it is an NSAID. I was prescribed it by that same beloved doctor DeCosse. And, yes, he was beloved. A wonderful person for my sister and I; head of surgery at Memorial Sloan Kettering Cancer Hospital in Manhattan when we had our first surgeries; transfered across the street to New York Hospital/Cornell Medical Center. However, Sulindac is an NSAID. And NSAIDS cause major inflamatory problems in the Duodenum of the Small intestine, that leads to problems for those with Gardners (if there truly is a difference). Today, denied by the American Medical Association in 1996 when Beth was diagnosed with Thyroid Cancer, associated with FAP is Pancreatic Cancer, Bile Duct cancer, Gall Bladder Cancer, Duodenal Cancer and Adrenal Cancer... all centered around and connected to the Duodenum that in Gardners Syndrome (or without it) developes duodenitis caused by NSAIDS (Sulindac, Ibuprofen)... And about decreasing the sizes and the number of polyps in the rectum, stomach, or the small intestine, Beth never had many and they disappeared with the removal of her colon. I had a ton, and that bled sporadically between the age of 13 (when I had my colon removed in 83) and the age of 32 (2001) when I had my rectum removed and my Ileum converted into a J-Pouch... But, I NEVER DEVELOPED CANCER, although I have had cysts, a ton of skin tags, an increasing number of lipomas and osteomas, while, my younger sister Beth the sugar-holic hummingbird or bumblebee gym obsessive marathon-runner, has developed cancer twice; rectal cancer this past March... The "experts" say that fat, excess of calories, over-eating and laziness causes obesity. My wife and I (due to my research into my health and certain health issues based within my FAP/Gardners/J-Pouch experience), removed wheat products and most simple carbs (with the exception of some fruit and a few teaspoons of sugar in our coffee) from our diets in March. In turn, for the first time in 8 years, we de-regulated our fat and protein intake... and each of us has lost exactly 15kgs/34 lbs ignoring increase in muscle mass... I went from a size 40 pant-size to almost a 34-pant size in those same 6 months. I mention this detail unrelated to FAP/Gardners because it is an ode to the so-called scientific experts in human metabolism... Is it science or is it a pandering to the various industries co-related with related chronic diseases plaguing "Americans" and the world that has bought into U.S. dominated health/medical dogma/policy and the American multi-nationalist sugar industry/food industry/pharmaceutical industry? And, of course, the Canadian, French and German Pharmaceutical companies have the same vested interests in preventing the scientific, medical and nutritional truth from filtering down towards the lay public. No, this is not a PETA movement for Animal rights or is it an organic health movement against Monsanto, or an environmental-ecological movement against fracking or so-called "chemtrails"... In fact, it is not a movement at all. It is just useful information that may help you to better manage your life, your health (and that of your family and friends) and your personal economy. What anyone does with any information ultimately has only to do with the individual. The consequences are extremely personal... The benefits are equally personal.

Bernard wrote: Read on methylation. It's too easy to become confused with all this when we don't have a degree in molecular biology.

My Response: I've read about methylation regarding my issue metabolizing histimines... I also don't have a degree in molecular biology... I didn't take that route 25 years ago, nor that of alternative nutrition (if there was an actual so-named field)... My father was the valedictorian of his Brooklyn College graduating class and a Fullbright Award recipient to Purdue University and became an Opthalmologist... However, he died suddenly of cancer of the colon that metastacized rapidly to his liver a year after opening up his medical practice. Now, had all of this scientific/medical/FAP/Gardners history (between 1973 and 2014) passed before his mind and eyes, maybe he would have been able to do something about this (for his older brother, my 3 cousins and my sister and I, along with his grandchildren and grand nieces and nephews carrying this gene). But, he didn't live to be able to do that and I didn't study nutrition, medicine or the various related sciences that (with adequate funding) would help us... But I do observe, think, read, listen and analyze much and my conclusion is that there is another possible avenue.

Maria wrote: I wonder if that's the difference in my family.. My daughter and I eat organic grown fruits and vegetable along with fish and chicken...no red meats we don't have a sweet tooth. No soda pops.gluten free diet.... The list goes on to what we don't eat! I guess you could call it a purest ? I just feel like I was dealt a bad deal .. So what can I do to help level the playing field.

My Response: You may want to look into the amount of refined carbohydrates in your diet... In the blood stream, bread, pasta, potatoes, corn, rice and sugar is the same: glucose. I've grown to believe that it isn't so much an issue of red meat or organic vs conventionally grown or bred produce or animals as much as it has to do with how much glucose ends up in your blood stream, hence a decrease or an increase in insulin and how much fructose goes to your liver. Granted, if we could all be guarranteed 100% organic, the better! The question isn't what caused the cancer, since you won't ever know; could be any of so many factors that you can't truly prevent, like living hundreds of miles upwind New York City in the upper Hudson or Connecticut river valleys in the Adirondacks, Berkshires, White or Green Mountains where you would think the air was cleaner, although it is not... So, move to the New York metropolitan area where maybe the density of microwaves or radiowaves or electrical currents probably are associated with increased levels of radiation and/or development of cancer cells... But, if the only food cancer cells survive and thrive upon is glucose, and we can live without glucose, then why not consider just how much glucose our diets provide to our blood stream? Maria, you were dealt a playing card... a deal... And maybe you were given a very difficult challenge. Remember the book published about Jim Morrison titled "No One Gets Out of Here Alive"? It's true. We were given a different challenge. And maybe we were offered the opportunity of looking at things differently than others born without FAP/Gardners... The question is "what are you willing to do?" I don't have solutions. And I have a feeling that no one has solutions, not even God (if we want to get into that)... Maybe it isn't about solutions but about how you live while you are alive. And it isn't about how often you are able to eat good tasting food and about truly filling your stomach, but about if you are truly eating in a way that is truly healthy for your body. Another idea: our bodies struggle for surviving under all types of circumstances, even if it seems that we were given a gene that seemingly acts as a premature self-destruct button... The gene is yours and it is your body's although both you and your body truly wish for surviving and for not dying until the very ultimate moment. Did you know that all cells have built into them a cyanide pill, a suicide code for when something goes wrong within their genetic structure...? It is called "programmed death" or cell apoptosis... With cell division, the cell has the option of suicide when they have divided in a way that will harm the health of the greater organism, better known as Maria. This harmful cell division is called a cell mutation, otherwise known as cancer. Normally, the newly formed cancer cell will commit suicide. But, not all cells perform the apoptosis and you have the beginning of a cancerous tumor, if the cell is able to feed itself adaquately... We've gotta turn this thing on it's head and see what we can do. And maybe stop waiting for the inevitable appearance of the Grim Reaper. And maybe there is nothing we can do for ourselves within this situation. But, maybe there is something we can do or help others do for the following generations... Maybe there is nothing we can do and we should just accept the cards dealt us. But, for some reason, it seems that we don't accept those cards, meaning that maybe we should continue working on this... It's genetic. But, maybe it's not only about genes...

Maria wrote: No refined Carbohydrates all the above is not on our diet. Organic to keep pesticide out of our body.

My Response: Ok... I guess I'm confused about, "I wonder if that's the difference in my family..." and "I just feel like I was dealt a bad deal.." The difference in your family as compaired with families of your siblings or your cousins? and that you've improved the experience of you and your daughter and regardless of what you've done for yourselves, it's still a bad deal? I imagine you've helped yourself and your daughter level a little bit of the playing field. Two years ago when I published on the Gardners Syndrome and FAP group walls the idea of doing what you and your daughter are doing, I received a very hostile attack as if I were an outsider who does not understand or believe their sufferings... And some people mentioned the diets and exercise regimes of their family members that should have changed the personal trajectories if what I was saying was correct. But, you didn't respond hostily attacking me. In fact, you said that you appreciated what I wrote. But, somehow, somewhere within your question I wonder if you also feel that nothing truly has helped or maybe your and your daughter's dietary lifestyle has helped. I do wonder if anyone knew about the issue with refined carbs... But, you do. I would think that within your personal and intellectual experience you would find my comments redundant... In the time that you've been living organic, refined carb-free and without red meat, have you and/or your daughter experience additional FAP/Gardners related health problems? Or do you feel that you've pretty much been able to control things but suffer from the suspicion/fear/concern that you aren't out of the storm yet and are just looking for a better guarrantee of a safe and healthy future?

Maria wrote:  My sister smoked and ate whatever... Fast foods, junk food... Sweets, other family members with the same FAP/GS as my daughter and I, yet we are doing and have been doing better. Some say we have a lesser degree of the disease, I'm wondering if it's the life style we have chosen that has helped us. I've seen others and noticed their poor eating habits and lack of activities. And question to myself if that hasn't added to an already compromised genetics.

I responded: And I feel like a Whoopie Goldberg in the 80s saying, "you go girl!" Now, how do we determine who got it better or worse. I say I got it worse than everyone else in my family in my generation. But, Beth developed cancer twice. I say the difference is her diet. However, keeping the mind open and considering just how much exercise she's done over the years and that she is a very competative marathon runner, one can also ask if her exercise would have burned all the glucose in her blood before it reached the cancer cells. But, if you read about cancer cells and glucose metabolism, you could be starving to death and they would be quicker at grabbing the glucose than the non-cancerous cells, as explains why during the end phase of terminal cancer the patients are ematiated; because the cancer grabs all of the glucose and the body has metabolized muscle cells for energy... The terminally ill cancer patient has consumed their muscle mass for survival... I'm sorry you are subjected to these responses (that can be interpreted as strange accusations, instead of applauses and petitions for assistance) by your family...

Maria wrote:  My youngest is fine.. She's just turned 30 with no sign of disease in sight. My other daughter the oldest is 36 and has the beginning of GS small desmiod tumors in her abdomen three years after her colostomy. Stomach cancer. Yet they are all coexisting. I'm having my Colon removed in ten days. My sister an nephew died years ago. Cancer threw out the body. My brother liver cancer and his son undergoing chemo. So we are in the same family, full siblings, with the same disease. They're if not dead, in a life threatening situation. We all live in the same state. My brother is very active... Much more than me. But he eats whatever he wants. Fast food, cake, candy. I now have one of my sister in laws, coping my diet... After going to the doctor for a check up. She has high cholesterol, and her thyroid is hyper something.

I responded:  I'm amazed in light of everything, all the information and all of the genetic FAP/Gardners inheritance in your family, that it has taken so long for you to have your colon removed... The previous science on FAP is that colectomy before the age of 40 is the necessary precaution for preventing mortality in 95% of the FAP/Gardners population. Granted, today we know that 30% of the FAPers present after the age of 50. That said, it seems to me that your family carries the "typical" FAP/Gardners gene... When were you diagnosed with Gardners? Recently or way back when? and/or why would you wait so long to have the surgery... or, why is the surgery necessary now and not before? Were you diagnosed a long time ago and were able to keep things at bay with your diet or was did the polyps recently appear?

Cynthia Wrote:  Other meds to reduce polyp growth include fish oil and turmeric, both anti inflammatory. Also people with fap from other countries don't have the same rate of colon cancer as us. It's still high but in Asia, think it was just china actually but not certain, colon cancer rates were 70% but stomach cancer was much higher in fap patients there than here. My dr pointed out that other non dietary factors might play a role but I think these discrepancies are worthy of further study.

I responded: Udo Erasmus suggests omega 3 fatty acids for increasing HDL cholesterol and decreasing risk of cancer. In his book, "Fats that heal, Fats that kill", he mentions that a certain biochemist or micro-biologist developed a technique for ridding the body of malignant tumors mixing milk protein (casein) with flaxseed oil, which is very high in Omega 3 fatty acids. The reason she didn't mix the flaxseed oil with cream or milk was because of the high sugar content (lactose). With her research discoveries in the 1950s, she was effectively blacklisted by all of the German research programs and universities because she refused to heed the desires of her department chairperson who also controlled the university laboratories when he offered her a chain of Pharmacies in exchange for her renouncing her research on Omega 3 and cancer. Why? Because his research was on inventing industrial vegetable oils, margarines and vegetable lard, all very high in Omega 6 fatty acids, in excess cause extreme inflamation. His research was being funded by the industry that was about to boom in the following two decades after Ansel Keys came out with the saturated fat/cholesterol/heart disease hoax in the 1950s... Not only was the department chair being funded by these companies, he was rewarded a large number of shares... As for Turmeric... it is considered the #1 natural anti-inflamatory in the world. Second would be Prickly Pear Cactus Paddles (Nopales in Spanish). Asian Indians should not have high rates of inflamatory diseases due to the presence of turmeric in their cuisine if not for the extremely high consumption of wheat products and rice amongst all the rest of the refined carbohydrates in their diet.

No comments: