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  • #16
    I think the concern arises that products generally regarded as safe (GRAS) for healthy individuals have not always been evaluated for safety in persons undergoing drug therapy - Karen's point above.

    Also there are many herbs etc. that are safe in typical use dosages, but dangerous in high doses. Nutmeg for example - perfectly safe as a spice, but eat several tablespoons of the stuff and it can make you really sick or even kill you.
    Fish
    TC1
    Right I/O 4/22/1988
    RPLND 6/20/1988
    TC2
    Left I/O 9/17/2003
    Surveillance

    Tho' much is taken, much abides; and though we are not now that strength which in old days moved earth and heaven; that which we are, we are; one equal temper of heroic hearts, made weak by time and fate, but strong in will; to strive, to seek, to find, and not to yield.

    Comment


    • #17
      Supplements are not regulated by the FDA, so many times it is difficult to tell what their composition is, hence their mode of action. There usually isn't a lot of rigorous testing done to this effect, so the scientific literature doesn't have a lot of insight into this.

      An issue that is hardly discussed regarding supplements (vitamins, herbals, and the like) concerns the interactions they may have with other compounds. Just like the body has a biological immune system that protects us from pathogens, cells have a "chemical" immune system that guards from foreign substances. This chemical defense system (also called the xenobiotic response system), though, can sometimes cause problems when multiple substances are combined. An example of this is the liver toxicity caused by taking alcohol and acetaminophen (Tylenol) together.

      It is also known that some compounds found particularly in herbal supplements may distort the xenobiotic system by either inactivating or accentuating the effects of certain drugs. A compound in St. John's Wort, for example, is known to enhance the activity of this system. Upon enhancement, certain drugs are rendered ineffective and these include things like birth control pills or chemotherapeutic agents. The latter is critical: the last thing a cancer patient undergoing chemo needs is for the chemo to be trashed and rendered ineffective (for example, activation of the xenobiotic system can either oxidize taxol making it ineffective or it can force cells to spit it out without ever reaching its target).

      All this science talk aside, I do think that one needs to exercise the utmost caution when taking vitamins, herbals, or any such supplements. It has been correctly stated that a healthy lifestyle (eating right, exercising, not smoking) can go a long way; but I would be extremely cautious about ingesting materials that have not undergone the scrutiny of a pharmacologic review.

      Originally posted by dadmo
      From what I understand cisplatin leaches the potassium from muscle tissue. In order to counter act this side effect Jason was given prescription strength potassium. Studies have shown that cisplatin can be detected in the body up to 20 after treatment. Should I be pushing Jason to take supplemental potassium?
      I consulted the oncology fellow in my lab for this, and he stated that you are partly correct. Cisplatin can cause a disruption electrolyte balance because it can carry with it large ions like calcium, potassium, but more frequently magnesium. The effects of these are acute and subside within a week or so after treatment. Being three years past treatment, I would expect pretty much all of the platinum to have left Jason's body. You probably know that bananas have a ton of potassium, so, if anything, I would recommend that approach rather than overloading with a supplement.
      "Life moves pretty fast; if you don't stop and look around once in a while, you could miss it." -Ferris Bueller
      11.22.06 -Dx the day before Thanksgiving
      12.09.06 -Rt I/O; 100% seminoma, multifocal; Stage I-A; Surveillance; Six years out! I consider myself cured.

      Comment


      • #18
        Thanks for the answer Fed. Bananas will be perfect. I also have to evaluate the supplements I take. In my own opinion I take far too many but I feel so darn good that I'm cautious about changing anything.
        Son Jason diagnosed 4/30/04, stage III. Right I/O 4/30/04. Graduated College 5/13/04. 4XEP 6/7/04 - 8/13/04. Full open RPLND 10/13/04. All Clear since.

        Treated by Dr. Rakowski of Midland Park, NJ. Visited Sloan Kettering for protocol advice. RPLND done at Sloan Kettering.

        Comment


        • #19
          Hello to all and thank-you for this healthy subject! I will certainly be coming back when I can jot some notes about all of the info. Scott, thank-you for moving the post. Even before Russell was diagnosed I was familiar with a doctor here in Napa. Board Certified Internist, body chemisty expert. She is brilliant!! Russell has been seeing her from the get-go!! Without discounting anyone, I would like to add that there are huge studies done around the world, including here in the US. One example is the use of IV Glutamine to enhance lung tissue. Glutamine is poorly absorbed from the GI track. Studies can be found on Pub Med, and as well other nutrients. It is very frustrating that there are not definitive results. As with the chemo, the docs at UCSF shared that no one in the world has a clue why the chemo drugs are working either! They know the combinations to use, but have no clue why they are actually working. We are in a boat in the ocean together. Glad for the good company!!!! All of the doctors said not to use supplements during chemo so as not to alter the combinations. I believe chemo acts as a free radical scavanger and as well, so do many of the herbs. My political brain is dominant right now after all of the latest concerns, so please do not quote me, the combination may be the other way around. We did however supplement through chemo and after. Not only was the chemo a concern, the bleo toxicity and lung damage was/is huge. I have also been reading about cellular protection during radiation...XRAYS etc. National Institute of Health is a reliable source to start. Also Cancer Centers of America. Oxford Journals and another that has slipped my mind, will try to update later. One of the scientific studies that Russell did just recently= The doctor that we are seeing ran a test on Russell's "intracellular vitamin count" The blood draw was sent to the lab, the cell was tested for necessary vitamins. Then the cell was tortured a bit with another chemothearpy of sort. (My protective mother stood up even with the thought of Russell's cell on a petri plate) then the cell was re-nourished and tested again. his ability to re-juvinate was at 75%. Actually much higher than the MD expected, considering Russell's journey with chemo and high dose steroids. Russell loves seeing this doctor!! Speaking of, he just walked in the door....guess what he wants!! Off to the kitchen Take care and thanks again to all, for the info and more "for being there!! " Sharon
          Click here to support my LIVESTRONG Challenge with Team LOVEstrong.

          Comment


          • #20
            Fyi

            For those of you interested in herbs and supplements, I have found the following book useful:

            The Natural Health Bible, 1999 (although there appears to be a 2nd ed)
            Edited by Steven Bratman, MD and David Kroll, Ph.D.
            Prima Publishing and or Three Rivers Publishing (2nd ed per Amazon)

            The book provides a lot of info on herbs and supplements, known safety issues and interactions, and provides a reference list of research studies published in scientific journals.

            This book is certainly no substitute for sound medical advice, but does provide useful information for discussion with your doctor.

            I believe it is critical to tell you doctor about supplements you are using.

            There are probably other science-based books out there, this is just one I am familiar with.

            Happy Reading
            Fish
            TC1
            Right I/O 4/22/1988
            RPLND 6/20/1988
            TC2
            Left I/O 9/17/2003
            Surveillance

            Tho' much is taken, much abides; and though we are not now that strength which in old days moved earth and heaven; that which we are, we are; one equal temper of heroic hearts, made weak by time and fate, but strong in will; to strive, to seek, to find, and not to yield.

            Comment


            • #21
              One last thought. Even herbs and supplements that are generally harmless can be contaminated in the manufacturing process if companies do not maintain adequate quality control and rigourous testing for purity of the product.

              Does everyone remember the tryptophan debacle from a few years back, (well, late 80's). An unknown compound (Peak X) co-purified with tryptophan and I believe resulted in a number of deaths.
              Fish
              TC1
              Right I/O 4/22/1988
              RPLND 6/20/1988
              TC2
              Left I/O 9/17/2003
              Surveillance

              Tho' much is taken, much abides; and though we are not now that strength which in old days moved earth and heaven; that which we are, we are; one equal temper of heroic hearts, made weak by time and fate, but strong in will; to strive, to seek, to find, and not to yield.

              Comment


              • #22
                Another good book is Beating Cancer with Nutrition Patrick Quilllan. He talks about the value of foods toward our systems and as well some studies that have been done so far. Take care, Sharon
                Click here to support my LIVESTRONG Challenge with Team LOVEstrong.

                Comment


                • #23
                  This is great that there's a subject on this. When I was sitting at home, I read a lot of junk on the internet about cancer cures and treatments with herbs.....it was just miracle after miracle...lol...I did come across this website though and it's great. We eat a lot of meals cooked from the recipes provided. check it out !

                  Reducing Cancer Risk With a Plant-Based Diet

                  Comment


                  • #24
                    There are all kinds of claims out there for cancer cures, and while I do believe there is a natural way to prevent and help reverse disease, we do have to be careful and very selective. Do a lot of research, ask tons of questions before adding herbs or other supplements to your diet, and of course check with your doctor to make sure they won't interfere with any treatment you may be on at the time.
                    There will always be money hungry people out to make a fast buck at the expense of our health or even our lives, but there are also very good things you can do that can help rebuild your immune system so that it can fight for you. It may sound too simple, but thats what its there for. To protect you. Take care of it so it can do a better job for you.

                    Did you know that its important to get a full nights sleep in complete darkness? Did you know that sleeping in the dark, with no artificial light around you (computers, tvs etc ) is necessary for a healthy immune system?

                    The people I talk to that are involved with amazon herb co. will say that they do not treat disease, but rather they treat the whole body to prevent disease, and to rebuild nutritionally deficient or damaged tissue, cells etc.. etc ..
                    Addressing the cause of disease through good nutrition, drinking plenty of water, eliminating things that are no good for us, getting proper sleep IN THE DARK, and yes, taking herbal "whole food" supplements, (probiotics) -

                    Juicing is all natural. Get some organic carrots (they're inexpensive) and start juicing DAILY. I really think people would be surprised to see how much better they feel if they do more to take care of themselves.

                    Detoxifying the body doesn't necessarily have to have to be done by using expensive cleanses that we hear advertised, and which I am skeptical about their safety.

                    The protocol Anthony is on, he has more BM's in two days than he used to have in a whole week. I know this is kind of personal, but its important too.

                    There are many things that have indeed been intensely researched and proven to help fight disease. We just don't hear about them because they are not the things pharmaceutical companies, or the FDA will give any backing to. Drugs are big business, and thats the way it will stay.

                    Theres a pill for everything, (and there seems to be many more things we need pills for nowadays) and they are even advertised on TV constantly now.
                    And even though we sometimes have to be treated with drugs, and are thankful that they exist, it does not make the statement about drug companies and the FDA untrue. Thats what they are all about .. $$$$

                    Why is it that we have so many illnesses now that at one time were unheard of, and are now COMMON problems?

                    Think about nutritional deficiencies, insecticides used in our food, irradiation of our food, processing, processing, processing, of our foods. Stress- we are bombarded daily with nothing but bad news on Tv and in newspapers. No one delivers good news, people are angry; look at the crime rate, and something else we now commonly hear about but never used to .. road rage, school and work place shootings etc .. The list is endless and this is why I say its about treating the whole body. All of these things and more play an important role in our health and having a strong immune system.

                    Most of these things we can change for ourselves.

                    I made a promise to myself about my family. There have been drastic changes in what they see on the breakfast, lunch, and dinner table these days.

                    School just started for my 16 year old, and she now carries her own lunch to school. All of it nutritious and organic.

                    She said she felt funny carrying her cold pack into the lunch room because no one carries lunch anyore. But thats how its going to be. School lunches are garbage.
                    I don't know why they even have the nerve to mention the food pyramid and then they feed the kids breakfast pizza, breaded frozen chicken (aka breaded dogfood), french fries and other crap like that. Its NOT healthy food, but is in fact very UNHEALTHY. And, why do schools have soda pop machines???? Oh, well. Thats another subject I guess.


                    There are a lot of things that we can do for ourselves-

                    We spend a lot of time seeking out the best treatment when disease strikes. Shouldnt we also seek out the best ways to prevent disease, and if were already there, seek out not only the very best doctors and cancer treatment, but the very best that we can do for ourselves as well.

                    While chemo helps destroy cancer, we know it damages good cells in the body too. Maybe you can help your body recover from damage caused by chemo and perhaps help minimize the risk of recurrence by taking great care of yourself.
                    Last edited by mstlyn; 09-07-07, 08:11 AM.

                    Son Anthony DX 12/11/06
                    L/O 12/20/06 Stage IIIA, 95% EC, 5% Yolk Sac
                    4XEP 1/29-4/6/ 07
                    AFP started increasing3 wks later
                    Residual abdominal mass found on CT
                    RPLND 6/8/07
                    Cancer in pathology-
                    80% mature teratoma, 20% Yolk Sac. --
                    No adjuvent chemo and
                    AFP normalised

                    July 22, 2010 ---- 3 years all clear!

                    Comment


                    • #25
                      well, this is certainly one of many great threads that I have neglected to read until now due to everything happening here.

                      I really think that we should be discussing these things, sharing what has or has not been useful or relaying things that we may have heard or read about, so that we can be more informed. It goes without saying that were NOT doctors or homeopaths but I think one reason why natural complimentary possibilities are not openly discussed, studied, or seriously considered is this taboo stigma attached to them. The more the public is made aware of possible complimentary things, the more demand to know about how they work with chemo therapies will arise, which will, in thought, spark discussion amongst the medical community. I suppose this is very optimistic, considering the general resistance by MD's to acknowledge natural remedies, however I don't think it's unreasonable. For example 'Flavopuridol' the experimental agent that danny received with FOLFOX was a bioflavonoid natural extract from a plant in India. In my search for clinical trials I found many that fused conventional chemo with natural components. One at the NIH was study of Gemcitabine with mistletoe extract. Interesting. I think there should be serious studies to learn more about these things so doctors can't necessarily have the leeway to say, 'No, because we don't know' to every suggestion of an herb or vitamin that a patient wants to incorporate. It does generate fear into the patient who is struggling to fight for his immune system, so that he/she can fight the cancer with chemo. Chemo can't do a darn thing if the doctor can't give it to you because your counts are too low or you're not healthy enough. Seems to me to be reason enough to start finding answers as to what natural things CAN be incorporated during chemo and will NOT decrease efficacy of treatment.

                      For danny we found a bio-available multi-vitamin that we believe has kept him healthier then had he not taken it. It was not allowed while on the study but was okayed for the GemEpi.

                      This is a link to the vitamin. We believe it hs had an impact on his counts during treatment.

                      It is called Physicians Rx Complete Formula.



                      A world renowned doctor of Integrated Medicine at Sloan, Dr. Gary Deng said this vitamin is fine to take with chemo because it is not extremely high in anti-oxidants. He reviewed the ingredients and dosages very carefully. Every other MD who was approached said 'No' before they even looked at what it was made up of. I see that mentality as a problem and was glad to finally be refereed to Dr. Deng.

                      No doubt, I could ask a hundred questions and probably add another hundred experiences in terms of food, nutrition, and homeopathic additions to cancer treatment...

                      Most pressing right now seems to be the impossible question for which no answer exists... How to naturally help increase low platelets??? I, like I'm sure all of you have been told, "NOTHING IN THE ENTIRE UNIVERSE!!!"

                      Somehow, I just can believe that...

                      Mikey

                      Comment


                      • #26
                        Tammy:
                        Great post, so far my concers about this thread have been very wrong. Good. Sloan Kettering has quite a bit of information about herbal medicines on their web site. Here's the link . It's not the best site, but it's very existance shows progress towards the acceptance of natural remedies. It is amazing how little respect western culture has toward natural approaches in medicine. I have taken hand fulls of supplements everyday for years and I am now about to begin looking for natural substances to replace the highly processed products I do take.
                        When Jason began chemo I was shocked to learn that they didn't want him taking any supplements at all. Our doctor was quite honest in explaining that they just didn't understand the interactions with the chemo. My beliefe is that while most herbs may be harmful during treatment there must certainly be some that would be beneficial. The problem is who will do the research? Big pharma seems to avoid this area because they can't make much money on products they can't patent. How could they recoup a multi million dollor investment in cures that you can buy at the food store? It's a real problem that has no answers, at least not right now.
                        Last edited by dadmo; 09-08-07, 10:49 AM.
                        Son Jason diagnosed 4/30/04, stage III. Right I/O 4/30/04. Graduated College 5/13/04. 4XEP 6/7/04 - 8/13/04. Full open RPLND 10/13/04. All Clear since.

                        Treated by Dr. Rakowski of Midland Park, NJ. Visited Sloan Kettering for protocol advice. RPLND done at Sloan Kettering.

                        Comment


                        • #27
                          As a big pharma scientist I am happy to say that big pharma has not ignored this area at all. The rainforests, oceans and everwhere you can imagine has been and continues to be expolored and natural extracts tested in large scale screens against disease targets. I have personally done some of these screens and we have found active components that we have taken rather far. It's the active components that can be made into a drug since, for instance, black sea urchin farming cannot be done in the quantities and with the certainty of a synthetic process. The urchins can't be patented but the process certainly can, protecting the huge investment in the research.

                          The other thing that makes it difficult to examine the interactions of a supplement with a chemo agent is that you need a large number of people to study it in, and those people need to be taking only one medication so the interaction can be studied. That is why phase I clinical trials are done in young, helathy males with no pre-existing conditions and not on any other meds....we need to look at what the drug does ALL BY ITSELF and how it is metabolized and how long it stays in the body. These are very carefully controlled studies.

                          I could go on and on, but a reason that these have not been looked at in against a complex chemo mix is that it would be very difficult to tease out the effects...and the risk of an adverse side effect is a risk not many want to take when fighting cancer.

                          I do reach for natural extracts for several common ailments, and keep an very open mind as to what they can do. It's the interactions with other meds we have to be mindful of, and chemo is not something anyone wants to drecrease the effectiveness of.

                          Off my soapbox now...anyone still awake???

                          Tammy, this is a great thread and I join Bill in bering very happy it isn't the spam magnet we feared!!!!
                          Last edited by Karen; 09-08-07, 09:55 AM.
                          Retired moderator. Husband, left I/O 16Dec2005, stage I seminoma with elevated b-HCG, no LVI, RTx15 (25Gy). All clear ever since.

                          Comment


                          • #28
                            While I understand that many people are skeptical about herbal remedies (I am not skeptical about herbal remedies, but AM skeptical about which ones, AND where I get them)
                            I don't think anyone doubts that we would be doing our bodies a huge favor by eating right. I'll post a few of the things that I have changed, and if anyone else has any good ideas, please post them

                            Keep in mind that the body is supposed to be alkaline, not acidic. Cancer can not thrive in alkaline.
                            There are test strips you can get at the pharmacy to test your bodys pH and see if it is alkaline or acid. If it is acid, make certain dietary changes and recheck your pH.

                            Fruits and veggies will make your body alkaline. Whether anyone believes that or not, it goes without question that fruits and veggies, LOTS of them are great for us.

                            Last year my dad had a colonoscopy and the doctors found and removed several polyps. Some of them were cancerous, but there was no spread. He has to have colonoscopies every 6 months, and so far each time they have had to remove more polyps. My dad has always been mr. hunterman, fisherman, outdoor guy and LOVES steaks and burgers. He doesn't eat much in the way of veggies.

                            On the other hand, his wifes' ( my step mom) favorite foods are fruits and veggies, tons of salads. She also eats grilled steaks and burgers, but fruits and veggies dominate her diet. She decided to have a colonoscopy after they found the cancer in my dad.

                            They found nothing. The doctors told them that they hardly ever find problems in the colon in people that eat a lot of fruits and veggies like she does.

                            Again, eat lots of fruits and veggies every day if possible, but get ORGANICALLY grown fruits and veggies. If you don't know of a place that offers organic foods, just google it for your area. I notice that some areas have jumped on the organics more than others, but I see local grocers starting to add organics to their shelves.

                            In the summer time or if you are from an area that can grow all year, you can probably find farmers markets, where you can get them a lot cheaper than smaller shops. When I see people in the area selling veggies from their gardens I stop and ask them if they use pesticides, fertilizers, or anything in their gardens. I found one that does not, and I walk away with a LOT of tomatos, zucchini, squash, green peppers, jalapenos, and green beans for very little. Five of anything for $1.

                            At the store I get organic romaine lettuce, which is the best lettuce nutrition wise and tastes great, organic green onions, organic carrots, organic celery, organic potatoes, organic garlic, organic white onions, organic milk, organic butter, organic grapes, organic oranges & other fruits.

                            I'll just say that I scour the stores looking very closely to see what I am able to buy organic. The food tastes better, and I know I have eliminated poison from my familys diet by buying organics, so I feel much better knowing this.

                            I do NOT buy white bread or wheat bread. I buy organic flax bread, and at a health food store I buy bread that is made with grains that are spoken of in the Bible. For anyone that believes in God, check this link out, and then look in your Bible if you want to make sure its there. Who should know better about what are bodies need than our creator? "God has given us in His Word specific foods to eat"


                            Ezekiel 4:9 says, "Take for yourself wheat, barley, beans, lentils, millet, and spelt; put them into one vessel, and make bread of them for yourself."

                            I found bread that across the package says Ezekiel 4:9

                            I read the ingredients and found it is made of all ingredients that were in Ezekiel 4:9. I buy it every week.

                            Use the back and next buttons at the botton of this page to see more foods that God specifically told us to eat.


                            At the health food store I have been gradually buying other things to replace things that I have been using for years. It is too expensive to do it all at once.
                            White bleached flour is a thing of the past in my home. I buy:

                            Organic Millet flour
                            Organic spelt flour
                            Organic Oat flour

                            Organic cereals that contain grains like millet and others. This cereal is kind of like those grape nuts in texture and weight. It doesnt have a lot of flavor, but I make Anthony eat it lol. I bought some organic figs which he doesnt like either. So I cut them up and put them in the cereal. I have him eat it for the health benefits only, and it's filling so he only eats less than half a bowl.

                            If you don't already, I highly suggest you look into bible foods, and organics. If you never believe in herbal remedies of any kind.. just fix your diet and buy pure foods as much as possible.

                            Sorry for making this so long. There is so much information about what we can do for ourselves to make a big impact on our health. I'll post more later.. lol; bet ya cant wait huh? heh heh

                            Son Anthony DX 12/11/06
                            L/O 12/20/06 Stage IIIA, 95% EC, 5% Yolk Sac
                            4XEP 1/29-4/6/ 07
                            AFP started increasing3 wks later
                            Residual abdominal mass found on CT
                            RPLND 6/8/07
                            Cancer in pathology-
                            80% mature teratoma, 20% Yolk Sac. --
                            No adjuvent chemo and
                            AFP normalised

                            July 22, 2010 ---- 3 years all clear!

                            Comment


                            • #29
                              Karen:
                              I know research is being done but this whole field was ignored for many years. Just think of my generation where mothers were told that manufactured baby formula was better then mothers milk. I don't believe the companies are evil just sometimes misdirected.
                              Just for the record I like the big pharma companies, they saved my son's life.
                              Son Jason diagnosed 4/30/04, stage III. Right I/O 4/30/04. Graduated College 5/13/04. 4XEP 6/7/04 - 8/13/04. Full open RPLND 10/13/04. All Clear since.

                              Treated by Dr. Rakowski of Midland Park, NJ. Visited Sloan Kettering for protocol advice. RPLND done at Sloan Kettering.

                              Comment


                              • #30
                                This really is an interesting post!!!! We have switched to whole wheat pastas and now I don't even like the regular. We probably eat red meat a dozen times a year. Dairy products are hormone fee and we actually prefer soy milk. I haven't sought out organics but I chose them when I find them and wash all my produce. Lots of fruits and veggies and in the summer it's heaven to buy this "in season" and local. A well balanced diet, high in fruits, veggies, and fiber and exercise goes the distance for good health. You can't change your genes, but you can make a difference with diet. We have a 10 year old daughter and when I look at her diet against her friends' (and their parents!) I know she's getting the best start I can give her.

                                I agree with Tammy and when I buy a supplement I go for the reputation of the company since these are not regulated by the FDA and you really have little assurance on what you're getting.

                                While not a lot is known about a lot of supplement:drug interactions, some is known, so when your doc asks what you're taking you should disclose prescriptions, over the counter and supplements.
                                Retired moderator. Husband, left I/O 16Dec2005, stage I seminoma with elevated b-HCG, no LVI, RTx15 (25Gy). All clear ever since.

                                Comment

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