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Lots of research is giving me 1 answer


Pat

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Good day all!

I have only posted once and I don't even think my signature is going to give any of our history. My husband was dx, 2-6-04 w/ sclc. 5 rds of cis/etop and that is all. I have been looking into alternatives, 100's of pgs to read, if not 1000's. Been to a naturalpath 2x. All advice, including theirs, plus actual phone call to survivors at cancercontrolsociety.com are pushing the clinics in Mexico, right across the border. Got another recomendation today from someone I know. Have any of you gone outside the U.S. for treatment? I trust this group more than any other. Sounds like the answer for remission/cure is there and not here. What a shame. If you have any information, please let me and all of us know.

Thank you!

Patti

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I can't offer any advice on the treatment questions, as I myself did not venture across the border, but I wanted to extend a welcome and I wish you and your husband the very best in your search for a cure!!!

Please share your experiences with us as you continue this journey!

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I would be very careful of going outside the country unless there was real scientific proof that it worked, not just testimonials

If someone did have a real cure down there, don't you think it would be worth the money to get it FDA approved but here or other countries. It would be worth billions.

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Hi John and thanks for replying to my question. Actually, the "treatments" they use in Mexico are quite inexpensive. The expensive part to the patient is staying at the clinic and receiving 24 hour care for usually 3-6 weeks. And of course it's unlikely that any health insurance plan is going to pick up the cost although I guess there are some that will pay a partial amount. None of the treatment regimes, that I have found, include any big company cancer drugs. They instead use juicing vegetables, vitamin supplements, acupunture, oxygen therapy, massage, etc., to name a few. Please note that none of these treatments alone would make anyone billions of dollars. What bothers me is that some of the treatments/supplements such as Laetril (vitamin B17) is illegal here in the United States. Isn't it funny that we can still buy the cigarettes that probably caused the disease in the first place but we can't buy a dirivitive of apricot seeds? Still looking for people in this group that have tried the clinics outside the U.S.

Pat

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Pat,

I think using those things as a supplement is good. But what are the actual results?

I actually think using certain complimentary therapies is probably not a bad idea. There has been some research on mushrooms (PSK, reishi, etc). Dr Weil recommends astralagus.

http://cis.nci.nih.gov/fact/9_3.htm

Dr Prasad (against most doctors views) thinks anti-oxidants can help during chemo.

If you go to one of these places what qualified doctors are on hand to handle emergencies?

Personally, I would go to a NCI designated center, but if you do go make sure it won't cause more harm

http://www.cancure.org/directory_mexican_clinics.htm

http://www.abcnews.go.com/sections/prim ... tives.html

Good luck and Tare care

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Hi Pat

I too have found that alot of the treatments and therapies that sound promising are located south of the border. As John says, I think you have to be careful with ANY treatment or therapy that you embark on, be it orthodox or 'alternative'.

I have to admit that I subscribe to the 'conspiracy theory'. That is, that treatments such as laetrile and others that are not going to make loads of money for any of the large pharmaceutical companies are unlikely to become mainstream treatments. They do not have clinical trials to back them up because no one wants to fund them - it is not in drug companies' interests to show that a naturally derived and easily attainable non-toxic (I realise that laetrile IS toxic, but many therapies are not) treatment can cure cancer! Which is not to say that they CAN cure cancer - I think the jury is still out on these therapies because the clinically and scientifically based research just isn't there.

One thing I find annoying is that everyone talks about how these 'alternative' therapies are unproven and potentially harmful. Well, the mainstream treatments that are available for late-stage cancer patients have been PROVEN to be of little real benefit in most cases, and certainly have many well-documented HARMFUL side-effects.

My mum has finished 6 cycles of chemo, which produced some shrinkage and she is now considered stable. She has been using complementary therapies throughout her treatment regime, and will continue to do so for the next three months before seeing her Oncologist again. I am not anti traditional medicine, I simply think that we all need to open our eyes to the fact that it is NOT all there is, and that other more 'gentle' therapies may be just as helpful, if not more so.

To answer your question, we have not really entertained the idea of travelling to Mexico (we live in Australia), but Mum has adopted a Gerson-like approach to her diet, and we believe that is helping her to remain as well as she is.

I wish you luck in your search.

Karen

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Hi

I am sorry to read about your husband's diagnosis. As I live in Australia I have no experience with the Mexican clinics although I have read about many of them. If Iwas living in USA I would hope my Mum would consider them. I wish that the whole cancer community and medical community could cease thinking of treatments as being either "alternative", "complementary" or "conventional", and just consider them all on their own merits before placing them into a category that comes with its own preconceptions.

I wish you all the luck in the world in your research and hope you find some people who have experience with these clinics. I am sure there must be some resources on the internet for this.

with best wishes for you and especially your husband

Jana

x

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Guest bean_si (Not Active)

I think it logical in a rather bleak way that pharmaceutical companies don't pursue most of these alternative treatments. They want something that they can patent and most of these treatments derive from natural sources; ergo, they can't patent them and there's no money in it for them.

That's not to say I believe that just because it's alternative it works. I consider the following as suspicious: Is this something that is obtained very inexpensively but sold for hundreds times more? Does the practitioner insist you can only get the product from her or him?

I think there are alternatives out there that work. It's just so hard to evaluate which one works and which one doesn't. I'm talking about such products as hydrazine sulfate, Ukrain, Sun Soup, Cancell, etc. BTW, I thought synthetic Laetrile was available in the States.

Cat

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bean-si,

it is so good to see you posting and in your usual clear way. I also agree that we have a situation where the pharmaceutical industry finances trials of drugs they have researched in laboratory; moreover, they support institutions like NIC and Sloan-Kettering in their refusal to acknowledge therapies which have not gone through the Phase I & II trials. Since the industry is alone in having the finances for such trials, the reccomendations of the NCI, FDA, Sloan Kettering and other "prestigious" bodies are unavoidably tainted, as are the exclusions.

There are a few supplements with scientific laboratory backup like Glutamine and Curcumin, as well as IP6 and IV Vitamin C with limited clinical trials. And it must be stressed that what limits these trials is financial support. The main thrust of these seems to be a "normalising" effect on cancer cells, altering them to normal cells which then die off like normal body cells (apoptosis). This approach, if successful, has I think the most promise for patients with advanced and otherwise intractable cancers although the idea of cell conversion should be useful at any stage. I rather like the www.lef.org web site for review of scientific support and explanation for supplements.

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So many times we just don't know how to evaluate the myriad of information we find, as Cat said.

I found a page(s) on the website that Karel suggested and I am going to post a link to it. There are many times people have asked me what supplements I take and I pretty much take all the ones on this page, coincidentally, although I found a few I wasn't taking and I take some that aren't on here. But I think for anyone wanting a start at what supplements to take these pages give great advice and they back it up with what appears to be sound research.

I also found I am not taking large enough does of some things.

It's a good start for those looking. Thanks Karel.

http://www.lef.org/protocols/prtcl-027.shtml

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Pat as one who grew up in Arizona i am naturally leary of Mexican Cancer treatment Center's espeacially those who make statement's that sound like they were driven there because of persecution.Laetril was one time evalued by the FDA i believe in the late 50's and was shown to have no proven effect on cancer but there are cases where people have died from using laetril,something about the gas in them.

I recieve the Dr. Weil health letter and seem to recall that laetril was one on the list he had of highly questionable cancer treatment's.I lost a brotherinlaw almost 30 years ago to a cancer that should have been easily cured but was convinced by member's in his church to use some kind of miracle concoction and he lost his battle with the cancer....

I strongly believe that in taking herb's and vitamin's, along with standard exceptable treatment and more and more of the medical community is slowly accepting it also.Please do not let that feeling of desperation and hopelessness cause you to make a bad choice,as i fight it all the time even tho my wife appears to be doing well at this point it's the what if's that drive's my fear's.......

Larry

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Hi

I am not sure what Larry is referring to as "standard acceptable treatment". If this is simply surgery, chemo and radio, which I know gives my Mum a 5 year survival I would rather not think about, then why wouldn't we all be looking at what different options there are out there? I believe standard, acceptable treatments for a great many late stage lung do not offer all that can be done in terms of survival and a cure. If they did, then surely there would not be so much research into new treatments?

I am really sorry to read about you brother in law Larry. That sounds like a horrible situation. I would never suggest to Patti, or anyone, that they should follow a "miracle cure", and only use that one treatment and ignore all others. However, most so called "alternative clinics" do not advocate that. They recommend an integrated and holistic appoach to treatment, based on both scientific research and alot of anecdotal evidence.

I do not know much about laetrile, except to know of it's controversy. I also know that as well as the negative and dangerous reports pertaining to its use, there are also the positive reports. This is the case for any type of treatment. We should think about how many negative reports there are out there pertaining to chemotherapy. I think the side effects of chemo hardly make it what one would consider a walk in the park, or without risk. Also these side effects are tolerated in an effort to gain a marginal survival advantage. I would not call this a "proven treatment" for late stage lung cancers. I am not suggesting one should not have chemotherapy or other conventional treatments, but perhaps they are not the only and best option. I do think that there is much more out there. I do think it is wise to research with a critical, yet open mind.

with best wishes

Jana

xx

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Hi Pat

Ditto what Jana said.

I don't know if anyone here has looked into what their chemo is costing. My Mum asked, and was told that ONE cycle of her cisplatin/gemcitabine combination cost approximately $7000 (Aussie dollars). She has had 6 cycles at this point = $42 000!!!!! I do not find it surprising that pharmaceutical companies are not interested in funding clinical trials into the effectiveness of apricot kernels!

If you are interested in considering laetrile as a treatment, then read the book 'Alive and Well' by Dr Phillip Binzel. He has been doing research in this area for many years, and has some statistical research comparing the use of laetrile to that of conventional medicine. It should also be remembered that many of the patients using laetrile adopt it as a treatment of last resort, and are already very sick, often quite incapacitated by the time they seek this therapy. Their physical condition would no doubt have an impact on both the likely success of the treatment, and the ability of their system to tolerate it.

Further to Larry's comments, I would not be surprised to learn that some people have lost their battle with cancer while taking laetrile, and that their systems may have been compromised by the treatment, but does this not happen all too frequently with 'standard acceptable treatments'???

I would certainly not advocate using laetrile without medical supervision, but I do believe that we need to keep our minds open to the fact that 'standard acceptable treatments' are going to do very little to help many of the people who come to this message board. Let's think outside the box!!

All the best

Karen

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Guest bean_si (Not Active)

Here's a link to a site that compares various complementary treatments. I can't vouch for it's accuracy but it appears they've done quite a bit of 'homework' on alternatives.

http://alternativecancer.us/index.htm#Comparing

On that site, you can buy a trial kit of many different treatments, Laetrile, Hydrazine Sulfate, Paw Paw, Essiac Tea, MGN-3, Cancell. Again, I can't vouch for the accuracy and I don't want to steer anyone wrong but I've checked his "facts" against other web sites and they seem to be the same, i.e., what to avoid when taking treatment, etc.

I recall that one of my chemistry professor's in college had his cancer cured by Laetrile. I don't know anything more about it as he didn't give details. It came up because some students were mocking people who tried it. They shut up after he told them his point of view. That was about 20 years ago.

Cat

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bean_si,

That website is not bad as far as it goes, but it does not go very far and covers only a few of the adjuvant treatments available. It leaves out IP6, Inositol, Glutamine, N-Acetyl-cysteine, Curcumin and Vit C to name just a few of those more useful than the ones on the website you quote. Please have a look at the www.lef.org website under their "Cancer Adjuvant Treatments"on the right hand side of the home page. That site is more complex than the one you quote, but it has many more supplements and goes into them in a lot more depth. The tables on the Alternative Cancer Treatment site giving points in columns are not very reliable although they look pretty, and the site leaves out far too much useful material compared to the lef.org.

Cheers and best wishes, Karel

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Dear All,

I'm pleased that my post about Alternative/Complimentary treatment centers have generated so much interest. I have no doubt, after speaking to long term cancer survivors (all have done some sort of natural, alternative treatments if the cancer couldn't be stopped with surgery) that the answer is somewhere outside the "standard therapy" mode. The problem is that no one seems to know exactly which "snake oil" they tried was the one that did the trick. The Mexican clinics I have researched evidently throw everything at you because, like us, they are not exactly sure what treatment or combination of treatments actually work. Maybe that is why no good statistical information about these treatments is out there. I also think that when the patients leave these clinics after their initial stay, there is no way to monitor their self treatment when they are at home. This is why I'm looking for people in this forum that have gone outside the U.S. for treatment. I would like to know where they went and how involved the at home regime was, and hopefully hear about more successes. The people I talked to that are listed in www.cancercontrolsociety.com have survived for so long (14-20 years with lung cancer) they can barely remember their treatments and what they did at home. Since I can't remember what I did last week, much less 20 years ago, I can understand. :wink:

Thank you all for your input and thoughtful answers!

Patti

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jana and Karenl i'm not knocking the use of other sources of treatment,but i believe that they should be used along side with standard treatment.And i agree that it should be monitored by a professional and yes your absolutely right about chemo's success rate and prostate cancer for example it has been shown that in late stage's that those who refuse chemo actually live a couple of month's longer on average....A gentleman i know here in town just lost his wife after a 8 year battle with cancer and i understand it was her Heart that gave out rather than the cancer.So hopefully my position is better understood and i can not remember the site i read this on but it was horror stories of people who went to mexican clinic's and the aftermath.As you know i've started my wife on Focus factor and she has returned to work and say's she does not feel all that tired but the big thing is no cold's or illness yet and she's a Supervisor at a state run old soldiers home with much illness.Also i have 2 bottle's of essaic tea in the fridge that she will take once chemo stop's.....

Larry

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Hi Larry

I know, I wasn't having a go at you in particular. I guess we have just been coming up against a great deal of negative attitude towards non-mainstream therapies with our Cancer Council, so we tend to retaliate quite strongly. I am sure that there are shonky scam artists operating out of Mexico, just as there are everywhere else in the world. I simply don't think it is wise to write something off just because it has not been able to get up and running in the US. There is way too much politics involved in the whole cancer industry for me to believe that something has no merit just because the FDA hasn't approved its use.

All the best.

Karen

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