I want to share the story of my wife, thankfully so far a good story, in hopes it may help anyone out there.

First off, I am NOT a doctor.

My wife was diagnosed with severe dysplasia / non-invasive squamous cell carcinoma in-situ 7 years ago on a lesion underneath the back of her tongue. Since then she has undergone 4 surgeries to remove the recurring lesion, which has always come back from pathology as the same result.

Her last surgery was 2 years ago, and did not come back with clear margins. She continued in pain for the last 2 years and put off seeing the doctor (which I do NOT recommend!). I am rabid in my determination to help my wife through this and have conducted my own research via the web and through various contacts I have with health professionals. We tried most of the 'alternate therapies' such as herbs, vitamins, diets, lifestyle changes, etc. Some things helped a bit, but the biopsies dont lie.

For the last year I have been tracking the developments in cervical cancer and its direct relation to HPV, a disease very similar to herpes in the way it affects squamous cell DNA. I approached several ENT doctors about this and received a shake of the head and not much else. I decided to dig a little deeper.

I am not a genecist or a doctor of any kind, what I am about to advise is not from a scientific study or anything like that. It is purely personal experience.

Running out of options, I decided to take action and try to take some control back. My wife's lesion seemed to flare up during times of stress, just as her oral herpes would do. With the recent advances in cervical cancer (and the very similar nature of cervical cells and oral cells) I decided 'what the heck' and let's try a herpes treatment to see what happens. My wife went to her doctor and got a prescription to Valtrex, a herpes outbreak reducer drug. She started treatment 1/6/05 and at that time had a bleeding lesion in her mouth that we were sure was the same non-invasive carcinoma in-situ.

Over the next month, she complained that her tongue in fact felt 'different' and perhaps worse. I avidly check her tongue and it definitely looked smaller, pinker around the edges, yet more angry and red in the center. We decided to keep going.

One month later, 2/7/05, she went back to her ENT for a biopsy. The doctor took a biopsy from 4 places, really deep pieces. He was thorough. One week later, we were in his office for the results. Nothing. No cancer, no precancer, nothing. The cells displayed inflamation characteristics, but no signs of mitotic abnormalities and no sign of any dysplasia at all. Wow.

During the later part of that month, and in the week and a half since the doctor visit (brings us to today) her lesion has continued to improve and is now looking and feeling very very normal. This, after 7 years of constant bad biopsies with no variation, a bad December, she goes on Valtrex and suddenly things change.

A cure? I have NO idea. She was diagnosed at age 22, never smoked, doesnt drink, none of the 'typical' explanations fit her. She has had continous static biopsy results for 7 years, 4 surgeries, margins that were never clear after surgery .... the only thing that changed was Valtrex.

Please do not take false hope away from this. We tried Valtrex as a 'lets try it and see' ... and I have no scientific way of knowing whether Valtrex had ANYTHING to do with her apparent remission. The timing is a huge coincidence, and the way it felt during the first month of her taking it are signs as well.

So maybe if you have oral pre-cancer (or cancer itself), have oral herpes (cold sores are herpes), you might want to consider it. Just to see.

Has anyone else tried Valtrex and have any experiences they can share?

With prayers for all cancer patients and survivors and their families,

Fred

Fred, welcome to the site. I'm not a doctor either but you and your wife's experience sounds interesting. Some of the more medically inclined on this board may comment at a later time. Have you discussed this with a doctor at a major cancer center? What does the ENT say? Hope the good news continues for you and your wife.

Fred
We really appreciate your taking the time to share your wife`s story with us.
I personally am of the "nothing ventured nothing gained" school of thought, So who knows , maybe you have stumbled onto something here.
Hopefully your wife will continue to have good results from her Valtrex treatment.
Thanks for sharing.
Marica

I'm a little skeptical about this. If this medication had such dramatic effects then how come we're not hearing anything about it?
If this is in fact a sincere poster, then I am thrilled for him and his wife.
If this poster is someone that is trying to get others to run out and get a perscription for this medication based on false hope then shame on him.
Minnie

To date there is no such thing as a viracide, and the mechanism by which Valtrex works does not involve killing the virus. The hottest thing in the head and neck, oral, and cervical cancer world is the new highly effective vaccine to prevent HPV viral infections, particularly types 16 aned 18, which are responsible for more than 95% of all cervical cancers. We are on the verge of seeing cervical cancer go the same route as polio. The implications of this in the oral cancer world, while not being discussed heavily by GSM and it's two partners Merk and Medimmune, are a big deal, particularly for those that come to this cancer via this virus which has clearly exhibited the ability to produce malignancies. HPV and HSV are not the same animal........ But the coreleations between HSV 1 and cancer are weak, though it could likely be a facilitaor or cofactor. This is not the same as a cause.

I assure you I am sincere, I understand skepticism which is why I tried to emphasize that this is just our personal experience with cancer and is not the result of doctors orders or any kind of scientific study. Valtrex helps prevent Herpes outbreaks but does not cure it. It may block the DNA-changing aspect of Herpes? I do not know.

Reading recent studies, I see that HSV-2 is possibly linked to cervical cancer. 44% of women studied with cervical cancer had Herpes-2, versus 26% in a control group of other women. HPV is highly linked, with 95% of women with cervical cancer having HPV. The actions of both viruses are similar, so it stands to reason that both could be contributing factors to development of cancer.

I wanted to share the joy of receiving clear biopsy results after 7 years of trying everything under the sun. It could have just been coincidental timing with her starting to take the drug. It may do nothing. It may make things worse. I have no idea. But it was the one thing that changed for my wife in this time period, so I felt obligated to share it, in case it really was real. Do with you want with my experience, but do not doubt my sincerity. No one who has dealt with this for 7 years deserves that.

Thanks for your time,
Fred

Fred, if you are sincere then there is no need to be defensive about being questioned. I would think you would understand our skepticism. After all the members of this board have been through, none of us deserves to be mislead with any miracle cures. If you are a true poster then I welcome you and your wife to the boards and hope to hear more good news for her.
Minnie

Fred
I repeat, thank you for taking the time to share.
Please don`t be discouraged from posting, we need all the help we can get.
I don`t think Minnea meant to be unkind, she is just wary as I am sure you can understand.
Hang with us awhile.
Marica

Hello Fred; I rejoice in your victory and hope that you will continue to let us know how your wife manages in her recovery.
Alas for those of us who have been burned and cut and had our bodies and our lives reorganized in unbelievable ways your post is hard to read...that being said, I am glad to have read it and appreciate your candor.
Sometimes I feel like we OC patients are stuck in the "one passenger per vehicle lane" while other more notable cancers fly by us to success. All the more reason to keep on sharing methinks.
Knowledge can be a double edged sword; so we are cautious.
Cheers, Fran

I apologize for coming off defensive - like you, I have been through the trauma of this terrible disease and my guard is still up. My wife has been battling it for 7 years, since we were 22 years old and newly married. We went through long discussions about even having children, with the poor prognosis involved, our future, etc. I myself have been beaten and battered by this, my own health deteriorating over the years. My sister also has Oral Cancer, Stage III and is currently undergoing radiation. I know what you all have been through and what you are going through - I share your pain, frustration and your skepticism.

My wife went through the 4 surgeries, has trouble speaking and swallowing, has been poked, bruised and battered for 7 of her 'best' years (arent our 20's supposed to be fun?), together we have been through all of the emotional highs and lows associated with cancer, and wanted to cautiously share our good news with the rest of you.

It was difficult to make the above post. I KNOW that you all want to grab onto any and all hope that comes your way. I did not want to offer any FALSE hope, because that makes you sink even lower emotionally. Believe me, with all of the herbs, teas, cherries, yoga, vitamins, diets (we even did a strict Candida diet together - that was TORTURE), all of the hope planted on each treatment and all of the end-result disasters, I was very cautious before posting. We tried this Herpes inhibitor and voila, she's seems to be improving (she is due for a follow-up in 2 months).

I was torn. Do I share this very unscientific and possibly harmful story with you? Or do I keep it to myself, in fear of causing further harm to some already desperate and badly treated people? I decided that inaction was the worst thing I could do - if this drug really does work - even for .000001% of patients and it helps ONE person, then it was worth it. I could not live with myself knowing my wife was walking around cancer-free without at least sharing my insight and what I have experienced with others.

I am an engineer by trade and think with math. This sort of thing ran through my mind:

FACT: Cervical Cancer is related to Oral Cancer
FACT: HPV is definitively linked to Cervical Cancer
FACT: HPV is definitely related to HSV (Herpes) in both delivery and in the way it attacks DNA
FACT: The same strains of HPV and HSV can exist both in the cervix and in the oral cavity
FACT: My wife has had HSV in her mouth since she was 5, and her herpes outbreaks coincide with the timing of her cancerous growth and development.
FACT: The only thing to change in the past 2 months was her going on Valtrex.
FACT: Valtrex is a known inhibitor of HSV, it disrupts the process by which HSV multiplies itself and spreads to other cells in the body - it forces the virus to 'sleep'.
FACT: In the last 2 months her tumor has shrunk and then seems to have completely disappeared.
FACT: HSV shows up in the same cell-types that Oral Cancer does - mouth, tongue, nose, ears, even eyes.

I had no choice but to share this with you. I would say that if you have had cold sores for years, and either started with pre-cancer or currently have pre-cancer, that you might want to give it a try. My wife was only diagnosed with full-blow invasive cancer once - at her first surgery, so I do not know if this treatment would do anything at all for full-blown cancer. I have no idea if it will help, but Valtrex is a common drug used by millions of people to curb Herpes outbreaks and it most likely cannot hurt to try it.

Fred

An off-topic rant here regarding research in OC.

Let me say that it frustrates me to no end that Oral Cancer is not researched as heavily as other cancers. One doctor at the Barrett Cancer Center in Cincinnati once told me it was because of the false impression that OC is only developed by tobacco users and its their own fault. I don't know about you, but I know multiple people whom have never smoked, chewed or done anything with tobacco that are cursed with this disease.

Cervical cancer has been linked to HPV - what is taking so long to draw the same link in OC? Why are no studies being done? Should we consider an informal study and take a poll for OC patients and see who has HSV or HPV? These viruses can be so dormant that many people have them and never know it. Why did my ENT laugh me off when I asked for my wife's most recent surgical resection to be analyzed for HPV and HSV? It may be time for OC patients to step from the shadows and share our stories more widely so the stigma of 'dirty smokers' is put to rest once and for all and hopefully improve funding.

I might only add that the OCF site is full of information regarding the link between HPV and OC. One of our advisory board members, Dr. Maura Gillison at Johns Hopkins has published extensively on the link between the two and her information can be linked to from this site. She is on the cutting edge of the data related to all of this. The data is out there; the cause and effect relationship between HPV, sex, and oral cancer have all been made and published in peer-reviewed journals. What has not happened is; that the sitting group of currently practicing ENT's and Dentists have not gotten up to speed on the current information.

OK Brian
We do NOT need your head in the oven, and much as it galls you will have to convince the PR company that the modern tecno is DVD and books are OLD HAT.. I KNOW YOU CAN DO IT
Sunshine... love and hugs
Helen

Brian
I know that you dont do this for kudo`s but my goodness you deserve them. Your frustration is palpable, would a mass mailing from us to the pharma company be of any help? I will go buy a lottery ticket tonite, Thats the only way I could ever find the funds needed.

Marica
ps. I`m with Helen, please don`t put your head in the oven..it would make a terrible mess.

It's not even the technology, it's the subject. One would tell tales of survivors and their battles, cetainly worthy, and possibly of inspiration to newcomers down the path if the physical outcomes do not scare the reader to death right then and there. But what is the market for this book? Who is going to buy it? Then for the same money you could reeducate all these doctors and potentially (when combined with a public awareness push which we are continuning to do on TV and elsewhere, and would like to expand into print/magazines) you could reduce the death rates by bringing the doctors who are clearly not up to speed into the fold of those capable of recognizing a deadly situation early. The two are apples and oranges. I'm for saving the lives first. The book can wait.

As to putting my head in the oven....I'll have to find another means of ending the frustration. It's electric.

Brian,

You are obviously very knowledgable on the topic, I would like to draw your attention to a presentation made in 2003 in regards to gene therapy and valacyclovir. I found this link in my search for a link between herpes and cancer. It does not go into causality between the two, but explains how a cyclovir can possibly help in treatment.

If links are not allowed here, please edit my post and I will PM it to anyone interested.

http://www.baylorcme.org/update/presentations/butler/presentation_text.cfm

About halfway down the presentation, the author specifically gets into his use of an Adenoviral vector and the HSV-tk gene. I would love your opinion on this study and it's relevance to anti-herpes drugs and the future of cancer research.

And no I do not own stock in the makers of Valtrex - I am just very excited.
Fred

I believe that studies have and are being done that's why we know that there is a strong possibility of HPV16 being a possible causitive factor. There is much research being done on the virus link (for instance Hep C virus causing liver cancer). We also know that tobacco products and alcohol are causitive factors. We also know that 25% or oral cancer patients never smoked or drank.

More than just the so called "sin factor" are the raw numbers, many more people are affected with breast and prostate cancer, for instance, and that is more likely how the research dollars are allocated. Out of 550,000 cancer deaths a year about 7,000 are from oral cancer.

This is a list of the NCI sponsored clinical trials going on within 500 miles of where I live:

http://www.nci.nih.gov/Templates/doc.aspx?viewid=CF77634E-36E7-47C2-A88E-9E7B163D71F3&ReqUrl=%2Fclinicaltrials

compare this with breast cancer:

http://www.nci.nih.gov/search/ResultsClinicalTrials.aspx?protocolsearchid=1454091

One thing is a fact - early detection really does work. We have seen morbidity statistics continually improve for most types of cancer as a direct result of early detection. This is one of OCF's primary missions - to get the word out.

Actually after this trial described in the power point presentation, the more successful things which involved HSV were done in 2004. Those trials used the virus as a vector...essentially a vehicle for carrying something into the cell, and something desirable not a negative. Since viruses can get past our immune system's cellular defenses, the question became, if we wish to alter the genetics of a cell we have to get into it first, and viruses became the most obvious means. Then they decided that gene p53 which controls apoptosis, or normal cellular death, was going to be the target. One commonality in cancer cells is that they are immortal. This is because gene-p53 is damaged in the dysplastic phase to malignancy. The switch (p53) that tells the cell to die on schedule, (our entire body is full of normal cells with programmed lifespans) or if the immune system senses that it is abnormal in some way is not there. So a novel idea was to attach a healthy version of gene p53 to a benign viral vector (HSV1), and infect a cancer-containing animal with it. Sure as anything, the virus did what it was supposed to do and got into the malignant and healthy cells, carrying p53 with it, which was reinstated in place, and the cell died as it was originally supposed to. This worked really well in the cancer cells, and of course in the cells that already had p53 it didn't do anything. (The virus infected both.) For sure this is a different perspective than you are describing in which the virus is the bad guy. But we are on the threshold of understanding more and more of all this. We thought that mapping the human genome was going to give us all the answers to which genes did what. We were ill prepared for the task still at hand, and that is figuring all that out. We actually ended up with more questions than we started with. It is not just the gene sequences, but also the various proteins (of which there are many) that interact with them. That makes the questions at hand tens of thousands of different variables more difficult to answer. We now know that cancer is not one disease, but many, hundreds or more. We are looking at the proteins that have to interact with a particular gene sequence to cause any one of them (cancers). We are moving towards targeted therapy, of which Iressa was one of the first. It was very effective, but only in certain patients, with certain genetic sequences, that were involved with certain proteins. This is all a gross over simplification of the whole thing. But we are looking now at therapies and cures that work for a particular sequence and eventually a cure that can be custom tailored to a specific cancer's genetic identity, following that a specific individual's genetic make up. Cancer is after all a genetic disease. But we are talking about two distinctly different things here

My mom's ENT put my mom on Valtrex last year for a period of time. I was skeptical, but eager to consider anything that may help eliminate the constant pain and frequent reoccuring sores mom gets. Unfortunately, in mom's case, Valtrex doesn't work. I'm certainly grateful that her doc considered it as an option though. You never know what may work given that so many meds are being used for purposes other than what they were initially produced for.

Fred, Thank you for offering your observations.

In today's news postings is a story about a Chinese biotech firm that has licensed the world-wide rights to a a virus-based treatment for oral cancer. The treatment was first developed by Onyx Pharmaceuticals of California and then abandonned. The Chinese company has picked up development and now, reportedly, has a virus that delivers the p53 gene to tumor cells.

The article is available at:
http://www.oralcancerfoundation.org/news/story.asp?newsId=624

Best, Sheldon

This is quite interesting. Could Valtrex harm anyone being treated for Head and Neck Cancer?

I, for one, think anything is worth a try. My Mom had tongue cancer a year ago, had 1/4 removed and neck dissection, lymph nodes were clear. One year later she has developed what the ENT oncologist terms pre-cancerous lesions in the same area under the tongue. We have an appt. on Wednesday, and I am printing some of these posts to show him and ask for a Valtrex prescription. Being she is 86 and very frail, any other type of treatment will be of no use to her. She has stated to me, "no more surgery, no radiation", but Valtrex, it's worth a try. Hopefully he will give us the prescription and there will not be any bad side effects, and it will work. Forgot to mention, she has been plaged by cold sores all her life, so there just may be something here. Thanks for all the info.

Regards, Margie

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Caretaker for Mom, 1st stage scc, surgery 1 year ago and pre-cancerous lesions appearing again.