4/99 Lump on neck. Biopsy local hospital. No cancer.
12/99 Johns Hopkins surgery. Stage IV, poorly differentiated, metastatic SCC with occult primary. I began a comprehensive study of cancer and treatments world wide.
5/00 JH diag SCC base of tongue. Stated most probably the primary. Refused rad. Went to what is now for treatments.
8/00 JH exam inc CT scan. No evidence of any mass.
11/02 JH dia SCC in neck. Removed an encapsulated SCC. A first for cancer type and location at JH.
2/03 JH noted a "flap" on tongue base. Option was to remove about 30%. Rejected surgery and returned for treatments as done in 2000. Exam by JH post treatments found no flap nor other abnormality.
1/05 JH found 2" tumor on side of neck and lesion on base of tongue. Refused surgery. Upon completion of alternative treatments each tumor was reduced about 80%.
3/05 JH indicated no neck mass and tongue base was visually clear. PET scan confirmed the exam but 3 other suspicious nodes found.
5/05 JH removed 3 nodes and in addition took 32 biopsies neck and shoulder area. No additional cancer found.
10/06 JH removed small encapsulated tumor. No post op action taken.
10/08 After many follow ups at JH no cancer can be found.
Vernon

Wow Vernon,

I'm speechless.
All I can say is I'm glad to hear that as of 10/08 you are cancer free. Congratulations and all my best to you.

Ija

Sounds like you had the best of both worlds: Alternative in Mexico and Conventional surgery here in USA. Definitely not the normal journey you read about on OCF. Curious though on how your John Hopkin's medical team felt about the mexican treatments.

You should buy Lottery tickets.

JH medical team is supportive although I made decisions without input from them. Once I said what I wanted to do they were very interested. Evidence based medicine is coming to the fore in the US. I see an overall trend at JH and elsewhere of wanting to heal rather than practice medicine.
Vernon

David,
NIH stats indicated for me a 1/2% prob of cure and a 19% prob of being alive in 5 years. I elected to try a cure where the success rate was estimated at about 52%. This will not be in print of course. How about the numbers for post op radiation and chemo as you know it?
Vernon

Vernon:

So glad to see you finally posted your info. Its a very interesting story. Im sure others will benefit from your experiences. Thanks.

Vernon,
Where did you get the 19% number? The AJCC published 5 year survival rate for Stage 4 oropharnyx SCC is almost 30%. I only had radiation and 2 Cisplatin Tx and my RO gave me an 80% chance of 5 year survival (even though my MO stated 28.2%). I'm a month shy of 6 years and have been cancer free ever since.

You had 3 surgeries, unless I counted wrong. I have to agree with David on this one, you're a very lucky man, in fact, the ONLY one I know of here who has forgone conventional medical treatment (for the most part) and is still surviving. If it were me I would be just more than a little nervous about the recurrences that you keep having. Many others here have chosen an easier path out - i.e. no radiation and are no longer with us.

I hope that you are right and that the alternative cures that have worked for you can be proven scientifically to be truly efficacious and not a fluke. Do you know what the morbidity rate is for the Alpha Medical Clinic? That's kind of an oxymoronic question since thay are never going to tell you (unlike US hospitals which have to publish that kind of data).

3 out of the 7 treatments mentioned on the link are not proven to be efficacious (and one is not a cancer treatment). So 1/2 of their cancer treatments are questionable. See:
http://www.quackwatch.org/00AboutQuackwatch/altseek.html

1. Whole Body Hyperthermia - They claim that there have been many published studies on human efficacy - I could only find animal studies and it was a combination treatment on rats, used with a chemo type drug. No human data published by a credible source.
2. Oxygen Therapy
3. Insulin Potentiation (IPT)
4. The Immune Modultory program looks an awful lot like IAT (Immune Augmentive Therapy)
5. Chelation is not a cancer treatment (and is a suspicious "treatment" anyway - right up there with colon cleanses.

You're smart hedging your bets and being followed by a CCC. I truly wish you the best.

It is my charter however to keep as much science and truth on the forum as is possible. I also want people to have hope that they can be cured and when the success rate for complete cure (response) of all types of cancer continues to improve with conventional medicine, it's impossible for me to champion alternative treatments without scientific efficacy studies. Reading testimonials on their web site doesn't make the cut.

We don't try to discourage people from alternative treatment, That's why we have an alternative treatment topic on the forum.
Our view on the matter has consistently been that alternative treatment should only be used adjunctively and with concurrence with your medical team (if that's the route you want to take) WITH conventional treatment.

There have been many instances here where people went across the border, had no success and died because their cancers had progressed to an untreatable state by the time they got into treatment.

National Cancer Institute, SEER Cancer Statistics Review 1975-2000 and/or National Center for Health Statistics, (2004). It seems like a long time ago now. I carried the info to JH at the time and their comment was that they had no quarrel with the numbers. I have never been one to be concerned with stage, etc. My concern is just like all, let's fix the problem. I presented a paper on alternative oxygen therapies to NCCAM, NIH in 2004. Several Ph.D. types asked for copies and stated that these therapies, some are evidence based, should be considered valid and used with the conventional.

Gary,
Suggest you check relative to quackbuster/quackwatch or the 20 sites they are affiliated with. Delicensed MD Stehen Barrett has lost cases in the California and Pennsylvania Supreme Courts.

I think that one has to consider the source.

"The Bolen Report began as a dream and vision and has become
the world's largest health newsletter exposing big-Pharma's
plans to thwart innovative medical practitioners." Quoted from their newsletter description

It's obvious to me that this site is part of the urban myth that pharmacuetical companies are witholding cancer cures so they can make more profit.

It's no secret that the legion of snake oil salesmen that prey on cancer patients are going to attack Quackwatch.

Here's a number of urban myth busters from Mayo Clinic:

http://www.mayoclinic.com/health/cancer/HO00033

Vernon,

While I think its great that you found a combination of standard and alternative treatments that work for you, one of the "opinions" from Tim Bolen is, in my opinion, truly offensive to cancer survivors.

[i]Everyone "in the know" knows that if they, or a loved one, gets diagnosed with Cancer, that it's time to get their Passport out of the safety deposit box, and start checking with those who keep track, to find out just exactly where to go, right now, for the best Cancer cure. For, if you stay in the US, and take the conventional variety of Cancer treatment, your chances of survival are slim to none.

The conventional US Cancer community is a murderous rip-off that generates shiploads of money. It provides the most horrible death imaginable, with the most suffering, the least hope, and the highest price paid. Europe, Asia, Mexico, the Islands, Central America all offer solutions that work...

...Health care in America is not based on the idea "How can we help you get better?" It is based on "How much money is available to us from your insurance, your co-pay, and your net worth?" The very first thing that happens when you go to a conventional health care practitioner is for you to hand them your insurance card. They then call your insurer and get the information on the limits of your policy. At that moment your fate, as a patient, has been sealed. Frankly, if you are diagnosed with Cancer, or some other major disease, you're on the slippery slope. You, and/or yours, are going to die horribly. And, there's going to be nothing left of your net worth. [/i]

(Boldface is mine.)

How would Tim Bolen explain my 17 years of survival after being treated for Non-Hodgkins Lymphoma? How would he explain the millions of cancer survivors in this country? And how would he explain the results of this study?

http://www.webmd.com/cancer/news/20080716/cancer-survival-rates-vary-by-country

I certainly don't want to get into a pissing match with anyone, but people like Tim Bolen really tick me off.

- Margaret

Vernon

It's clear you are a sincere believer and well intentioned. Please realize that I,if not all of the regular posters here, also sincerely believe that such web sites are delusional. Don't expect much in the way of converts. If it were not for conventional US surgery, you would be dead.

I know a few scientists for Merck and J&J...not one became a scientist for the money. Are there professionals out there just for the almighty dollar? Yes. Is there a conspiracy to keep a cure any cure away from the public? No. I'm a realist and I will always go the conventional path to help me...But, if my life was basically over and I had the means do do something off the beaten path..Would I do it? Of course.

Vernon, I believe you did your research and picked the path that you were most comfortable with...And what counts is that you are an OC survivor.

My path was surgery, neck dissection and radiation...A plan developed by an ENT, HO and an RO...my tumor board. Was I happy? No. Was I comfortable with my choice(s)? Yes. Am I going to beat this? There are no guarantees in life. But if I can hold my head high and help a couple of people here and there through my steps of life...then I did okay.

Any place, web site, whatever, that states that there is better medical care in some of the countries on that list than in the US, clearly is not stating the facts accurately. As many of us that have been to the US's finest institutions can attest to, the halls of those institutions are rife with wealthy people FROM those listed countries and around the world, who have come here to the US because the care in their countries is not on par. That should tell patients something.

I think everyone should make their own decisions, and go with what they believe in. It seems like you have made decisions based on what YOU believe to be accurate information. More than that you are still around today. But whether those alternative therapies cured you or not, might be open to interpretation. No one here wants to get into that debate. Truth is there is no way to know for sure.

So for you this has been a successful (to date) path. Since you are new to this board, you have not seen the many people that have come here over the years, chosen Mexico clinics, herbal remedies, and even God as an alternative, and sadly they are not with us today. The truth is, if any of the things that you are suggesting were able to be measured in some peer reviewed, evidence based methodology, have the success rates that equal your personal experience, hospitals all over the US would be doing them. They are not, and it is not because there is some suspicious reason being withheld from us, but because they cannot be documented to that level of efficacy. It is just that simple.

That you have been back for additional surgeries indicates that like many, (particularly those with surgical only original solutions) this disease has revisited you as beyond your original primary event. It feels, (speaking as someone without all the data), like what we have seen here so many times before, and know to be incomplete primary treatment, the single largest cause of recurrence after field carcinogenesis.

The fact that there are over 12 million cancer survivors out of treatment in the US today, means that while cures elude us, and deaths continue to be high, many survive their battle using the treatments that we have. Given that this disease is not one, but about 500 different diseases, some of which there is no early detection mechanism for and therefore putting them in the "always kills you in short order" listings, science has a monumental task, as there are so many idiosyncrasies to each one of them. What works in one does not work in another. That is another reason that I find buying into the broad brush stroke statements of alternative cures to be so off base. NOTHING works in all of them, or even most of them. But that doesn't stop the sellers of those alternatives from making you believe what we know to be untrue... they can make what ever cancer you have right. There is no single broad brush stroke, works on all cancers, idea. God knows if there was we would not be doing what we are in our hospitals today, and researches would no longer be looking for that which is still elusive. Jeez some cancer we still don't even know what causes them, let alone how to cure them.

We are pretty strict about where we refer people to for information. The web is full of bogus cancer cures, testimonials that cannot be traced to anything, treatments, drugs, diets, that cannot be substantiated for efficacy, and by it's very nature- the Internet is an unregulated environment, a wild west of cons mixed in with vetted sites. Some are clearly full of outright lies, half truths, gross misrepresentations, bogus testimonials from straw individuals, and are more interested in selling their clinic, treatment, book or whatever and separating you from you money than curing cancer.

We need to be careful what we advocate for. As informed patients who are trying to help others, we have to provide people with something that offers our hard won insights, tempered with the knowledge that we are not doctors. In short, we must do no harm. OCF itself has a responsibility to only state what it knows through peer reviewed published data to be accurate, and IF we speculate, editorialize, or stray from that, state clearly, as I have in the staging section of the diagnosis section, that it is my opinion, not a fact.

So having said all that, I want to be perfectly clear. People should do what they believe is in their best interest. OCF believes that treatments and institutions whose methodology has been vetted, published in peer reviewed environments, etc. have to be where we send people to. In the end if someone wants to believe that a clinic in Mexico has a cure that we don't have here in the US, that is certainly their right. But OCF will not be facilitating sending them there. There are enough sites on the web that will do that for them if they look around.

We are all pleased that your journey continues to be positive. I personally am pleased that you decided to tell others about it. It is food for thought for all. I would not personally recommend your path to others. But you clearly are a true believer. I urge anyone who is about to make treatment decisions to make them with the assistance of doctors that are specialists. And as with all things, we are all unique biological entities, and your milage may vary.

Vernon,

I'm glad that this treatment is and has been successful for you. I'm not sure what is the correct path and not....my sister chose a path similar to yours.....she had a white spot on the side of her tongue that was watched for 10 years, earlier biopsy shown to be inconclusive. She was a dental hygienist, so had some knowledge of this type of cancer. When the spot started to spread and cause pain she had another biopsy done that showed SCC. Of course another surgery was done to make sure all the margins were clear and the surgeon wanted to take some lymph nodes, but my sister declined, thinking that he was being too aggressive. She also declined the recommendation for radiation. She was into holistic medicine and so healthy, that she felt there was no way this could have spread. The second surgery showed no signs of SCC, and she felt validated in her decision. About six months later she discoverd a lump in the neck area under her jawbone and had a partial neck dissection, instead of the radical that was recommended. Meanwhile she did the colon cleansing, juicing, was totally off dairy products and meat. She was always in the fittest of shape with great energy, there was just no way this cancer was going to win. The cancer returned once again and at this time she had the radical neck dissection, and once again the margins returned clear. She declined the radiation that was recommended. Then tumor returned within 4 months to the cartoid artery, surgery too risky and she underwent radiation and chemo. Needless to say, it wasn't successful. I have read of many here who have the surgery and undergo the radiation treatment after the first diagnosis of SCC, only to have the cancer return within months or a year. Who knows what treatment works, it is such an insidious and evil cancer and I'm glad for you that your path has been successful. In hindsight, I wish my sister had listened to what was recommended, I don't know if that would have made a difference, but the path she chose was not the right one. I hope that you continue to have good health with the blend of alternative and conventional disciplines you have chosen.

Take care,

Nancy

I asked my head & neck surgeon once why I survived an advanced stage cancer he simply said "luck". I had radiation only (and 2 chemo treatments) and it will be 6 years since intital Dx this month. I don't drink or use tobacco products and eat a resaonably healthy diet.

On Wednesday, 08/05/09, I went to Johns Hopkins for a regular checkup. The doctor could find no cancer. This marks my 10 year survival. Anyone interested can view my journey on my 10/10/08 post. I do not spend a lot of time on this site but feel free to contant me directly. I still get calls for info each week even after this period of time.
Vernon

I was super polite to you the first time you abused this forum by ignoring the rules you agreed to and posted a live link to your BOGUS MEXICAN CANCER CLINIC. Again, the fact that you were lucky does not justify you touting for yet another South of the Border FRAUD preying on cancer patients' fears and hopes.
I pity the poor people who do contact you as they must be desperate to believe. I am ashamed that this OCF forum lets you perpetuate this nonsense. It is especially disgusting since you were cured by the very conventional treatments you received here in the USA yet attribute it to mumbo jumbo feel good treatments at El Loco clinic. I have reported your post to the moderators and hope this time instead of everybody humoring your dangerous views they take at least your link down. But thanks for giving me something to post in the coping anger fear forum
Glad you are cancer free, and hope you quit misleading people and shilling for con artists soon.
Charm

AMEN!

julieann

Since the link is still up to the bogus Mexican clinic which is a violation of our communal rules, please note that the poster has had 4 recurrences, which is an appropriate testimonial to the El Loco clinic he recommends.
AGAIN, THIS IS A FAKE CURE AND YOU WILL BE WASTING YOUR MONEY AND YOUR TIME AND ENDANGERING YOUR HEALTH OR THAT OF YOUR LOVED ONE IF YOU CONTACT HIM;

I take full responsibility for not removing the links earlier. They have been removed in accordance with OCF policy.

In your first post one of your entries was "10/06 JH removed small encapsulated tumor. No post op action taken." How does that fit into your 10 year "cancer free" survival claim (I was never good at math).


We need to congratulate and celebrate with Vernon his 10 year survival. That's what his most recent post was all about.

I am closing the thread from further discussion because of the derogatory tone.