CancerCompass message board discussion started by ChrisHB on 7/21/2008 http://www.cancercompass.com/message-board/message/all,26288,0.htm Thu, 04 Dec 2008 00:00:00 GMT Thu, 04 Dec 2008 00:00:00 GMT http://backend.userland.com/rss RSS.NET: http://www.rssdotnet.com/ I have posted several times in search of ways to help my brother, Mark.  Mark has colon cancer Stage IV with spots in liver, lymph nodes, abdomen. rectum.  He had chemo, sugergeries, and two recent stage 1 clinical trials which ravaged his body.  After the second clinical trial, Mark consulted with his oncologist and decided to take a break from all chemo, trials, and to go onto disability from work. Do only what he wanted to do.  Mark has been regaining weight and strength over the past weeks. I had wanted to help Mark rebuild his health and looked into ways to do this through nutrition and diet. Came onto this site in my search & I emailed Patrick Quillen, author of "Beating Cancer With Nutrition".He recommended that Mark get an opinion from Fereshteh Akbarpour at the Orange County Immune Institute in Huntington Beach,CA.  Mark got an appointment and her protocol was for a 4 week period of IV's, supplements, nutrition, massage , and infrared treatments at $5,900 per week. He saw a dietician through his medical plan and  has also considered the Whitaker Wellness Institute in Newport Beach,CA asa person on this site had said her father went there. Feeling unsure, I did a google on Quack Watch and found both the Orange County Immune Institute and Whitaker Wellness Institute listed under "Questionable" Clinics.  There was no link to explain why. I want Mark to get the best care he can, but I do not want him to spend the quality time he has with his loved ones on something that has only testimonials, but no concrete research.I would appreciate any input. I want to help my brother, but the more I dig the more I get confused. I am the only person doing this research for my brother, and wonder if it is time for me to step back and let him be.I would appreciate any thoughts. Thank you  ChrisHB Mon, 21 Jul 2008 00:00:00 GMT On 7/21/2008 ChrisHB wrote:I have posted several times in search of ways to help my brother, Mark.  Mark has colon cancer Stage IV with spots in liver, lymph nodes, abdomen. rectum.  He had chemo, sugergeries, and two recent stage 1 clinical trials which ravaged his body.  After the second clinical trial, Mark consulted with his oncologist and decided to take a break from all chemo, trials, and to go onto disability from work. Do only what he wanted to do.  Mark has been regaining weight and strength over the past weeks. I had wanted to help Mark rebuild his health and looked into ways to do this through nutrition and diet. Came onto this site in my search & I emailed Patrick Quillen, author of "Beating Cancer With Nutrition".He recommended that Mark get an opinion from Fereshteh Akbarpour at the Orange County Immune Institute in Huntington Beach,CA.  Mark got an appointment and her protocol was for a 4 week period of IV's, supplements, nutrition, massage , and infrared treatments at $5,900 per week. He saw a dietician through his medical plan and  has also considered the Whitaker Wellness Institute in Newport Beach,CA asa person on this site had said her father went there. Feeling unsure, I did a google on Quack Watch and found both the Orange County Immune Institute and Whitaker Wellness Institute listed under "Questionable" Clinics.  There was no link to explain why. I want Mark to get the best care he can, but I do not want him to spend the quality time he has with his loved ones on something that has only testimonials, but no concrete research.I would appreciate any input. I want to help my brother, but the more I dig the more I get confused. I am the only person doing this research for my brother, and wonder if it is time for me to step back and let him be.I would appreciate any thoughts. Thank you  Chris You would be wise to disregard anything you read on the Quackwatch site. Their agenda is to discredit ALL alternative protocols. You will find proof of that here: Dated December 22, 1999, the Harvard affiliated Massachusetts General Hospital's Neurology Web Forum published on the Internet an article under the title :"PAC" Money for "quackwatch". It reveals that "the FDA and the Pharmaceutical Advertising Counsel ("PAC"), which represents some 35 major drug companies, have formed and co-founded a corporation under a joint letterhead, calling itself the National Council Against Health Fraud ("NCAHF")." Stephen Barrett, MD, who publishes "Quackwatch" on line, William Jarvis, MD, and others, are paid by PAC " to publicly discredit as unscientific or unknown any of all viable herbs, vitamins, homeopathic remedies or non-allopathic therapies, particularly those that are proven to have the most promise and present the greatest threat to the PAC members"........... To read the entire article go to http://www.altcpualumni.org/wholisticed/hartal2001.html more here:......... http://www.canlyme.com/quackwatch.html Shemay Tue, 22 Jul 2008 00:00:00 GMT You are right - only testimonals and no concrete research - therein lies your answer.  Those protocols that ONLY rely on alternatives are very dangerous.  They may help but no proof that they work alone except for incidental isolated data. There are many treatment centers that offer both approaches in combination.  I would continue my research and find them. I used both to treat stage 3a colon cancer.  It has taken 3 years and I am NED at this time according to two PET scans 6 months apart and my last CEA two weeks was 1.7, the lowest it has ever been.  I devised and developed my own alternative program based primarily on diet.prayer and positive thinking.  That approach along with 3 chemos and radiation WORKED. Arnold Tue, 22 Jul 2008 00:00:00 GMT Chris - here is one to look at - there are many.  The Cancer Cure Foundation - Google that and go to "Choice of Therapy" and integrated approach.  Good luck and God Bless Arnold Tue, 22 Jul 2008 00:00:00 GMT  On 7/21/2008 ChrisHB wrote:I have posted several times in search of ways to help my brother, Mark.  Mark has colon cancer Stage IV with spots in liver, lymph nodes, abdomen. rectum.  He had chemo, sugergeries, and two recent stage 1 clinical trials which ravaged his body.  After the second clinical trial, Mark consulted with his oncologist and decided to take a break from all chemo, trials, and to go onto disability from work. Do only what he wanted to do.  Mark has been regaining weight and strength over the past weeks. I had wanted to help Mark rebuild his health and looked into ways to do this through nutrition and diet. Came onto this site in my search & I emailed Patrick Quillen, author of "Beating Cancer With Nutrition".He recommended that Mark get an opinion from Fereshteh Akbarpour at the Orange County Immune Institute in Huntington Beach,CA.  Mark got an appointment and her protocol was for a 4 week period of IV's, supplements, nutrition, massage , and infrared treatments at $5,900 per week. He saw a dietician through his medical plan and  has also considered the Whitaker Wellness Institute in Newport Beach,CA asa person on this site had said her father went there. Feeling unsure, I did a google on Quack Watch and found both the Orange County Immune Institute and Whitaker Wellness Institute listed under "Questionable" Clinics.  There was no link to explain why. I want Mark to get the best care he can, but I do not want him to spend the quality time he has with his loved ones on something that has only testimonials, but no concrete research.I would appreciate any input. I want to help my brother, but the more I dig the more I get confused. I am the only person doing this research for my brother, and wonder if it is time for me to step back and let him be.I would appreciate any thoughts. Thank you Hi I'm afraid you are going to find little assurance with regard to alternative medicines because there is a lack of research in that area.  It would be wonderful if the monies were available for the research - for two reasons.  It would either prove that they work without most of the bad side effects (great for every cancer patient out here) OR it would disprove that they work (shutting down every quack or quack facility that uses alt med as a way to make huge amounts of money).  I personally chose treatment at the Cancer Treatment Center of America because they have an integrated approach.  I had my radiation and medical oncologists as well as my nutritionist and naturopathic working with me.  I googled the Whitaker Wellness Center and if it were me considering going there I would be concerned with the many different areas they seem to have their hands dipped in - I personally would want an institute that specialized in alternative therapies for cancer patients.  If any research spreads out into so many areas, how much time can be spent on any one area.  I also came across your posting w/ the cancer survivor network.  I read some of the responses and you got some excellent advice.  For one, how does Mark feel about altenative meds?  It is very important that his feelings are taken into account.  I know you will have to find an alternative medicine or institute that specializes in an alternative medicine that you are 100% comfortable with and sure of because Mark would be placing his life in their hands.  I wish you all the luck with your journey and pray for the very best for Mark.    Diana  Dlynn1210 Tue, 22 Jul 2008 00:00:00 GMT Arnold...With all due respect...wondering why are you so adament about not using ONLY alternative treatment?  I have seen more than one post from you like that.  There is no concrete research in these areas as nobody will pay for them.   Do you have stats that ONLY alternative treatments are dangerous?  If so, please attach the link. vjh68 Tue, 05 Aug 2008 00:00:00 GMT  On 8/5/2008 vjh68 wrote:Arnold...With all due respect...wondering why are you so adament about not using ONLY alternative treatment?  I have seen more than one post from you like that.  There is no concrete research in these areas as nobody will pay for them.   Do you have stats that ONLY alternative treatments are dangerous?  If so, please attach the link.Hi again -I just responded to you on another post about juicing.  While I'm not Arnold, he and I share the same belief (isn't it wonderful we live in the U.S. and we each have a right to vocalize our opinion) about using conventional treatment along with alternative/complementary treatments.  I can't speak for Arnold but I can tell you why I don't advocate using ONLY alternative treatments.  For whatever the reason, as Arnold and you said, there is no concrete research to prove any of it works.  If I want to take a chance with my own life, I have every right to do that but I don't believe I have the right to talk anyone into using ANY kind of treatment (conventional OR alternative) - one that could cost them their lives.  I believe that a few people on this forum who strongly advocate for only alternative treatments do not stop to think about the possibility that they could cost someone a life.  How?  By convincing someone to utilize a particular alternative treament that might not work for the other person when possibly a conventional treatment would have helped.  That is a huge responsibility!!  You can advocate for alternative treatments without tearing down conventional treatments, doctors who utilize them, and/or the FDA.  Intravenous vitamin C or carrot juice or Diet A & W Rootbeer may have worked for you but it won't necessarily work for someone else (please note for me the rootbeer didn't work).  I am a cancer patient (I'm not a doctor or a scientist) - I am not qualified to insist that anyone use a particular type of treatment because how can I guarantee that it will work for them???  I can't!  I can only tell someone what worked for me but there is no guarantee that it would work for anyone else.  You said nobody will pay for the research for alternative treatments but I have to ask why no one will pay for it.  If anyone came up with a cure for cancer - I don't care what it is - it could be pineapple upside down cake (boy where did that come from) - and it would sell for thousands and thousands of dollars which would turn into billions of dollars with the number of people who are diagnosed with cancer each year.  My parents loved pineapple upside cake but I never liked it; however, if it cured cancer I would eat it 24/7 and pay whatever they asked for it.  Seriously, when we pay for the chemo drug, we are not paying for the actual cost of the drug, we are also paying for all of the research that went into proving that it worked.  The same would hold true for any alternative treament that could be proven to work.As I said in my other post, the Cancer Treatment Center of America (which sponsors our wonderful forum here - the same center that provides a section for alternative treatments I might add) is undergoing trials with intravenous vitamin C and the FDA is overseeing the trials.  Yes, it does have to be after all conventional treatments have been expended but how else to tell if the intravenous vitamin C was working.  I am so excited about this because intravenous vitamin C is one alternative that I have read about that I believe sounds reallyyyy promising.  As cancer patients/caregivers, everyone of us would love to hear that something works against cancer - something that doesn't kick our backsides in the process.  I've been the chemo and radiation route and if there were an alternative that someone could have guaranteed me would work I assure you I would have taken that route instead.  I took the route that gave me MORE assurance that I would beat cancer.  I know a day will come that some alternative treatments will be proven to work but at the same time others will be proven to be the hoax that they are.  That day can't come soon enough.  I want to add one thought - just because conventional treatment didn't work for someone doesn't mean that the person would have beat cancer if they had used an alternative treatment.  As my grandmother used to say (a very wise woman) no one escapes this world alive.  When you read someone's post (like Arnold's and mine), please keep in mind that every one of us on this forum want the same thing - for the person who has cancer to beat the big C.  We all offer something to think about enabling OTHERS to make decisions as to what is best for them.   Diana    Dlynn1210 Tue, 05 Aug 2008 00:00:00 GMT  On 8/5/2008 vjh68 wrote:Arnold...With all due respect...wondering why are you so adament about not using ONLY alternative treatment?  I have seen more than one post from you like that.  There is no concrete research in these areas as nobody will pay for them.   Do you have stats that ONLY alternative treatments are dangerous?  If so, please attach the link.I want to add one comment - I do not have stats that ONLY alternative treatments are dangerous but I am one of those people who want bonified proof that something WORKS before I bet my life on it - it is only dangerous if someone uses only the alternative treatment which doesn't work.  With no trials and/or studies there is no way of telling how many people survived/didn't survive. Dlynn1210 Tue, 05 Aug 2008 00:00:00 GMT Had to do research essay for school and looked at feasability of using Chinese medicine as alternative or complementary treatment, and which are most likely to achieve results. There is actually more research going on than you would think and some of the studies open up further research because they are promising while others show no results at all. I used databases from several college libraries which get at many of the medical journals, etc. These are often not readily accessible to the general public. tongrenhealer Mon, 11 Aug 2008 00:00:00 GMT  On 7/21/2008 ChrisHB wrote:I have posted several times in search of ways to help my brother, Mark.  Mark has colon cancer Stage IV with spots in liver, lymph nodes, abdomen. rectum.  He had chemo, sugergeries, and two recent stage 1 clinical trials which ravaged his body.  After the second clinical trial, Mark consulted with his oncologist and decided to take a break from all chemo, trials, and to go onto disability from work. Do only what he wanted to do.  Mark has been regaining weight and strength over the past weeks. I had wanted to help Mark rebuild his health and looked into ways to do this through nutrition and diet. Came onto this site in my search & I emailed Patrick Quillen, author of "Beating Cancer With Nutrition".He recommended that Mark get an opinion from Fereshteh Akbarpour at the Orange County Immune Institute in Huntington Beach,CA.  Mark got an appointment and her protocol was for a 4 week period of IV's, supplements, nutrition, massage , and infrared treatments at $5,900 per week. He saw a dietician through his medical plan and  has also considered the Whitaker Wellness Institute in Newport Beach,CA asa person on this site had said her father went there. Feeling unsure, I did a google on Quack Watch and found both the Orange County Immune Institute and Whitaker Wellness Institute listed under "Questionable" Clinics.  There was no link to explain why. I want Mark to get the best care he can, but I do not want him to spend the quality time he has with his loved ones on something that has only testimonials, but no concrete research.I would appreciate any input. I want to help my brother, but the more I dig the more I get confused. I am the only person doing this research for my brother, and wonder if it is time for me to step back and let him be.I would appreciate any thoughts. Thank you hi I have prostrate cancer I use alternative medicine and its worked for me for two years now, to treat my cancer and with the help of the wonderfull people on this Cancer compass website  it work. All you got to do is follow the advice you get on this site I had to use  alternative medicine due to ill health so the doctor wont take the risk of an RP operation I dident won’t to use brackey therapy and chemo doesn’t work with prostrate cancer so the doctors were  unable to help me. But Im glade now I didn’t have the op  when this all started I was in a lot of pain and  unable to empty my bladder properly.  I also was tired all the time I use to sweet a lot my shirt and pants  were all way wet, Id get up in the morning and the bed would be soaking  wet now I have no trouble at all empty my bladder no more wet shirts and pants and I feel better and no more pain. I also had a low tolerance to the cold be fore. I also had loss my libido, I can feel it slowly returning. All this from using alternative medicine on this website I was advise to not drink or eat any thing that has simple sugars as cancer loves sugar I take  large amounts of  vitamin C so I take 6000mg of B-I O C  a day, I take  400 mcg of selenium a day. And all so I drink green tea and Echinacea and I take Zink I all so eat Pawpaw skin an all. these is just some of the things you can do they  all work There are a few people here who can help just let them know will take care God bless Ray        jcr65566 Mon, 11 Aug 2008 00:00:00 GMT  On 8/11/2008 tongrenhealer wrote:Had to do research essay for school and looked at feasability of using Chinese medicine as alternative or complementary treatment, and which are most likely to achieve results. There is actually more research going on than you would think and some of the studies open up further research because they are promising while others show no results at all. I used databases from several college libraries which get at many of the medical journals, etc. These are often not readily accessible to the general public.Hi TongrenhealerI don't remember if you are the person I responded back to a week or so ago that had completed a research paper and if so, you've never indicated if you are a cancer patient or caregiver or a student (which is wonderful if you are that interested in this subject).  I was a teacher for many years and I battled cancer last year just recently having a scan that indicated no cancer - I am now cancer free - so I speak from a teacher's viewpoint who also is more knowledgeable about cancer than I would like to be.  I can remember doing my own research papers and know that I was so much more knowledgeable when I finished than I was when I started but I have to say after living life - there is no greater incentive to research a subject than when your life or the life of someone you love depends on it.  I can honestly say that there are people on this forum that are more knowledgeable about a particular cancer than you or I could ever be.  I focused on researching my type of cancer - and now on another as I have a close friend still fighting his battle.  None of us are surprised at the amount of research going on in the field of cancer and cancer treatments - with conventional, immunotherapy, and/or alternative treatments.  The problem is finding bonafied trials that document results - and not just from a viewpoint that favors their trial.  I had a statistics professor that told us to always keep in mind when looking at stats that they can always be skewed to show whatever the researcher wants them to show.  Look at who is doing the research, what results did they want when they started, how will they benefit from positive results, those type of questions.   Thus is the problem w/ alternative treatments only.  Are there some that will work as stand alone treatments - I'm sure there are - but the problem is that so far none have been proven to work - even though some are giving hope that they may work.  Sometimes it is because they are not sufficient enough to stand alone, other times conventional treatments are used in conjunction so how do you prove that the alternative had any effect (or to what degree), other times there have not been enough studies done to warrant cancer patients taking a chance with their lives to go with alternative treatments only (while some will chance it, not a great number will take a less proven method of treatment over one that has "shown" excellent results) - the list goes on.  The biggest problem for a cancer patient or caregiver is not having too little documentation to research but having too much documentation to weed through.  So is the wonder of the internet.  Many believe that the only way to go is conventional treatments, many of us believe in utlizing the best of both worlds combining conventional and alternative treatments, and some prefer alternative treatments only (although many of these do so only after conventional treatments don't work which leaves them in even more of a compromised position to win the battle against cancer).  For me one of the most promising alternative treatment is intravenous vitamin C - the research that has been done and the results obtained makes good common sense.  The biggest discussion you will find on this forum is between those that advocate for alternative treatments only and those of us that advocate for conventional in conjunction with alternative treatments (we would love to advocate for alternative only if there were documented proof they worked).    As you said, some research shows promise and results in additional research - refining the research even more for improved results.  Such is the use of Salmonella - research has been going on for close to 10 years that I have read about.  I would love to see research scientists from anywhere in the world come up with the "cure" for any type of cancer.  That would be cause for wonderous celebration for all cancer patients/caregivers.Diana Dlynn1210 Mon, 11 Aug 2008 00:00:00 GMT