Dear Daughter Deb, Ray, and others:
There are some really good questions being asked in this message thread.
How to know whether a web site that talks about alternatives is reputable? 3 things I watch out for: is the site selling something, and do they try to back up what they are saying? Sites that don't immediately identify themselves as a vendor, but instead advocate this or that treatment, and then just happen to be also selling the "cure" they are advocating, need to be looked at very, very carefully, and verified against as many other resources as possible, before being used as references on the board - and even then, those references may be removed by the moderator. Personally, I question EVERY site that tauts one treatment over another when they are trying to sell the particular treatment they are recommending - sellers tend to be biased - I most value information from those who have nothing to gain other than helping people get well. Also, any site that recommends alternatives but does not provide references for their data should be suspect, especially if they are not able to cite any scientific data in support of what they are saying. (I am not just talking about the results of research studies - but rather basic scientific information on how something works e.g. that IV vitamin C therapy is thought to be effective against some cancers in some people because it may convert to hydrogen peroxide inside the cancer cells, thus hyper-oxygenating the cell and interrupting glycolysis and other cancer cell functions - THAT is a scientific rationale that can at least be verified, shown that more than one scientific group is looking at. Not that we have to be able to track down ALL the references on it, but that reputable references are given in the original article we look at. And that the information can be validated by other sources that also provide scientific rationale,) THe 3rd thing I watch for is VERY important: the site should offer some kind of evidence that if done correctly, the treatment is safe to use.
And yes, this kind of information is very hard for lay people to follow and understand. That's why I recommend that before people start any regimen other than basic common vitamins, supplements and herbs, they either consult with a holistic practitioner familiar with the regimen, or they attempt to verify the validity of the treatment on a number of web sites, written references, or a larger body of anecdotal evidence than just 1 or 2 people. Remember when doing a web search, the very first references to come up are the most popularly accessed - hopefully they will also be the most accurate. I more trust information that comes up in the first 5 or 6 articles on a search list than the 25th or 26th article.
Now if you see article after article, site after site, reference after reference, all saying the SAME things about a certain treatment, that gives higher validity to what is being said about the treatment. I have learned, AND STILL AM LEARNING, to check the stuff I'm interested in against as many references as I reasonably can, especially utilizing those sources that I have seen many other people citing as reliable. I also am learning to use those sources that provide the most scientific data and information about how to SAFELY use alternatives as my primary "go to" sources when I am trying to learn about something new.
As for finding alternatives that are going to produce a "cure" - I'm going to say some things that may sound very pessimistic, seeming to present a picture of doom and gloom - but that isn't my intention. (I'm a pragmatist, a realist, yet I am learning to accept the wisdom of some ancient philosophies, such as we must live moment to moment, for that is the only guarantee of time we have, and that we must place our hope on the tremendous elasticity and strength of the human soul and spirit rather than on physical things. That is why I try to speak with empathy, yet at the same time I try to present a realistic picture.)
So - about alternatives and "cures": with very early cancers, stage 0, stage I, and perhaps a few stage II cancers, and very low grade cancers - grade 1, and very few grade 2's - a complete cure is possible in a fair percentage of the population, provided timely treatment is given in the proper amount and duration, and the patient is able to gain/maintain proper nutrition and support of the immune system and other cancer-fighting mechanisms of the body. And it must be a treatment to which that particular cancer in that particular person responds. For these people "cure" means that the cancer is diagnosed, treatment is given, the cancer dies and is reabsorbed or the cancer cells are converted back to normal cells, and the person doesn't have any more problems with that particular type of cancer.
Unfortunately, statistics show that most cancers that do not fall within the narrow confines of the above-mentioned group. Many cancers are not diagnosed early - in fact, researchers and major experts in the field are more and more indicating that many cancers have already at least started the process of distant metastasis when they are diagnosed, even if they are staged at II, or III. That makes treatment - ANY treatment whether conventional chemo/surgery/radiation or alternative - all that much more difficult. Plus it is becoming more evident that many treatments are not of long enough duration or properly matched to the individual to ensure that the cancer is completely eradicated, and that the person has the necessary medical support and change in lifestyle to prevent cancer cells from recurring.
Pretty sad news. But it doesn't mean we stop trying. It DOES mean there is a tremendous need for heightened awareness that fighting cancer isn't just a treatment - it's a way of life.
The medical community defines "cure" for those who have experienced metastasis NOT as being "No Evidence of Disease" but rather as no evidence of GROWTH for 5 or more years. Major difference in terminology and concept here. NED: no evidence of disease = no measurable cancer. No tumors, no lesions, no elevated markers, no clinical evidence that there are live cells. This is the cure that is achieved for the first group of people I talked about who are never diagnosed with metastasis. NO Evidence of Growth: can mean that there are still live areas of cancer - tumors, lesions, whatever - but they do not show any evidence of growing bigger or spreading. This = remission. Probably EVERYONE with cancer wishes in their heart for NED/true cure. The reality is that for many people with metastasis, the best they will achieve is remission, and they will have to guard against relapse/recurrence for the rest of their lives.
But HEY, this is NOT a prophecy of doom and gloom. It really isn't!!!!! If we can each FIRST find those things that will stop our cancers from growing, we have the rest of our lifetimes to keep them from ever growing again, and we can live with cancer.
But people say, "How can you LIVE with cancer," or "I don't want to LIVE with cancer - I want to be cancer FREE!" Well, again - we ALL want to be cancer free, but if the choices are to live with tumors still present, or to let it take over so that we die, I sure will choose to LIVE with cancer and work to keep myself healthy in hopes that what I do will gradually cause those cancer cells to die or convert to normal. Means a lifetime of devotion and work - but I don't like the alternative! (The idea that cancer kills is not quite true - only in some cases is the cancer the cause of death - e.g. where it causes damage to cells because of displacement as in the brain and the lungs, or where it blocks flow of vital elements such as bile and major arteries or veins, or where it erodes through tissues and causes fatal hemorrhage. Otherwise, when people pass on due to cancer, it is actually because the cancer has starved their other organs to death, or has so polluted their body with toxins that the major organs shut down and will no longer support the functions of life.)
So yes, we can find treatments that STOP the growth of cancer cells, and we can continue to live for a very, very long time with cancer still in us. And if the treatments we try just slow the cancer down - that's ok, too. SLOWING THE CANCER DOWN buys us time to continue looking for the treatment that STOPS cancer growth. Stopping cancer growth buys us time to either find that which will kill cancer cells/cause them to reabsorb or convert the cells to normal. And if we can't find that which kills them or converts them, once we've stopped them from growing, we can learn how to eat and live to keep them from ever starting to grow again, and yes, we can LIVE with cancer.
Now, about treatment. I've been reading a lot lately about some specific treatments for stage IV cancer, and in my research have found some articles by folks with good reputations in the cancer treatment community who say there are some major problems with using alternatives:
#1: the alternative treatment chosen is not strong enough to fight metastatic cancer. There are about 300 known alternative treatments being recommended for cancer, at least in the U.S. Of those 300 treatments, there are only about 12 that have been shown both through physician's/clinics' practices, anecdotal evidence (which by the way, I think can be VERY valid), and through the limited studies that have been done on them, to be very effective for stage IV cancer. Unfortunately some (but not all) of these treatments are expensive, and may have been banned in some areas. THey also almost all of them need to be done with some type of professional support - whether it be a dr or otherwise licensed or certified practitioner, or by someone VERY experienced with the protocol. Not everyone who would benefit from these treatments can afford them or can get the support they need, especially since medical insurance and health care provisions do not cover them.
#2: many people who try an alternative regimen do not stay on it long enough, and do not properly understand what these treatments do and how it will affect the clinical signs of disease. For example - Protocel. Works by getting into the cancer cell and changing the internal environment of the cell so that it starves to death. It also causes liquefaction of the cells, which on CT and PET scan and MRI can actually for a while look like the cancer has gotten bigger - it hasn't - it has died, but the resulting liquid "soupiness" on scans looks like a bigger tumor until it has a chance to be reabsorbed. This death and liquefaction of cells can also cause an increase in cancer markers - the toxins that are released by cancer cells into the blood that show elevated markers, etc, are massively released with this type of cancer cell death, and results in false positives on lab tests. If the dr/practitioner caring for the patient is not aware of the mechanism of action/changes brought on by the protocol as it does it's thing, then a treatment that is actually WORKING can be misinterpreted as NOT working at all, and the patient stops the treatment before all the cancer has been eradicated. Over time the remaining cancer cells recover and start growing again.
#3: lots of times people will choose an alternative treatment, but do not completely follow the protocol - doing only parts of it, or using parts of another protocol with it. Very dangerous to pick and choose in this way - invalidates both treatments. And people often continue to take other substances that negate the treatment. E.G. many antioxidants cause way too much activity in the ATP cycle and therefore cancel out the effects of treatments that kill cancer cells by depriving them of energy. For that reason, vitamin C is NOT recommended with some protocols (for instance, Protocel and graviola) - yet if people aren't aware of that and think they are doing a good thing by taking vitamin C, they might actually be causing the treatment not to work.
#4: Fact: every person's body chemistry is different, unique. This means that a treatment, food, herb, supplement that is effective for me might not be effective for you. (Not including those basic elements that EVERY person must have in sufficient quantity to fight cancer - basic vitamins, minerals, enzymes, etc.) So how do we know which treatment is going to work for us individually? If I had the answer to that, I could be very rich! The best thing I know to say is that people wanting or needing to use alternatives to fight cancer should do their best to find a professional experienced in the use of natural treatment to help them find the best therapy possible based on individual needs.
And yes, that leaves a lot of us out in the cold. I guess that is why there is such a need for wonderful places like Cancer Compass where we can try to find answers.
#5: by the time many people turn to alternatives for treatment, it's already very late in the process, and they are in such poor health that they can't tolerate treatment that would work fast enough to put them in remission. That doesn't mean that for these people alternatives fail as completely as other treatments they may have had - indeed, for these precious people an alternative treatment may be that which would give them relief of pain, better nutrition and hydration, and buy some more time for them to receive and also give comfort to family and loved ones, get their affairs in order, and move on with strength and dignity to that which awaits them.
So what do we need to do? For one thing, if we choose an alternative, we need to do our best to find evidence that it is strong enough for our cancer, other than the word of just one or two other people. Can we find evidence that it has been used by a number of people, effectively and safely? Next, if we start a treatment, we need to do our best to find out what changes over time to expect with the treatment, and to stick with it long enough for those changes to pass and the treatment to work fully. With stage IV cancer, most of these treatments can be expected to take at least several months to work, and will need to be followed up with either another stage IV treatment, or a stage III treatment. Metastasis can take up to a year or even 18 months to be fully arrested, and then we can expect to maintain ourselves on a stage II treatment for the rest of our lives. Perhaps not as wonderful an outcome as being "cured" - but hey, I consider every minute, every hour, every day of staying alive to be victory. That's why I list myself as a survivor rather than patient, even though I know I am in remission rather than "cured." And I intend to have many, many more years ahead of me, even if it means constant vigilance to contain remission.
I've found some websites and books that are very comprehensive and consistent with each other in the information they present, and are well in line with multiple other sources. I rely heavily on these sources, but they are not my only references. I know that others on the board have these type of favorite stand-by's, and they aren't all the same as mine. I DO think that each person needs to develop their own list of "go to" learning places that they consider to be reliable, and sources against which to check new information when it comes to them . I've posted a number of these sources on Cancer Compass, and I know some of the other frequent posters about alternatives have sources they repeatedly post that aren't censored. I would say that any site you want to give as reference should be confirmable through other sites, and should be looked at thoroughly for extraneous stuff that might be deleterious to the board and/or being highly aimed at selling "alternatives".
Sources that I repeatedly use and recommend to others:
www.cancertutor.com
www.lefcancer.org
http://www.alkalizeforhealth.net
"Prescription for Nutritional Healing" 4th edition by Phyllis and James Balch.
"Dr Susan Love's Breast Book" 4th edition by Dr Susan Love.
"Cancer: Step Outside the Box" by Ty Bollinger
"Cancer Free" by Bill Henderson
"Alive and Well" by Dr Philip Binzel Jr
http://lpi.oregonstate.edu/infocenter/ (Linus Pauling Institute at Oregon State University - has EXCELLENT information on vitamins, minerals, supplements, enzymes, etc)
I also have successfully posted webpage addresses to online vendors of supplements - e.g. I sometimes talk about white mulberry leaf extract and offer the webpage for Swanson Vitamins - I think stuff like this will not be removed by the moderator as long as it's obvious that we are just saying "this is what I use" or "this is one of the places where you can buy it" and we aren't trying to sell it ourselves and we obviously are not trying to promote business for any particular vendor.
The two other things I would say about choosing alternatives, and that I have read in many other references: if it sounds too good to be true, it probably is too good to be true. And if you can't afford a major established treatment protocol, or can't get the assistance of a professional experienced with alternatives, choose a wide variety of foods, herbs and supplements that cover as many of the bases as you possibly can, rather than putting your hopes on one, or a few, cures. Just try to do whatever research you can do to make sure that those foods, herbs, and supplements are working together, rather than cancelling each other out.
I hope at least some of the things I've said will help. We all need each other to learn, and share, and stay strong.
Sincerely,
Tre