#38206 02-19-2005 01:55 PM | Joined: Feb 2005 Posts: 5 Member | OP Member Joined: Feb 2005 Posts: 5 | 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 | | |
#38207 02-20-2005 06:55 AM | Joined: Apr 2004 Posts: 482 "Above & Beyond" Member (300+ posts) | "Above & Beyond" Member (300+ posts) Joined: Apr 2004 Posts: 482 | 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.
Regards, Kirk Georgia Stage IV, T1N2aM0, right tonsil primary, Tonsilectomy 11/03, 35 rad/3cisplatin chemo, right neck dissection 1/04 - 5/04.
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#38208 02-20-2005 10:20 AM | Joined: May 2003 Posts: 928 "Above & Beyond" Member (500+ posts) | "Above & Beyond" Member (500+ posts) Joined: May 2003 Posts: 928 | 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
Caregiver to husband Pete, Dx 4/03 SCC Base of Tongue Stage IV. Chemo /Rad no surgery. Treatment finished 8/03. Doing great!
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#38209 02-20-2005 04:19 PM | Joined: Aug 2003 Posts: 1,627 Patient Advocate (1000+ posts) | Patient Advocate (1000+ posts) Joined: Aug 2003 Posts: 1,627 | 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
SCC Left Mandible. Jaw replaced with bone from leg. Neck disection, 37 radiation treatments. Recurrence 8-28-07, stage 2, tongue. One third of tongue removed 10-4-07. 5-23-08 chemo started for tumor behind swallowing passage, Our good friend and much loved OCF member Minnie has been lost to the disease (RIP 10-29-08). We will all miss her greatly.
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#38210 02-20-2005 04:32 PM | Joined: Mar 2002 Posts: 4,916 Likes: 63 OCF Founder Patient Advocate (old timer, 2000 posts) | OCF Founder Patient Advocate (old timer, 2000 posts) Joined: Mar 2002 Posts: 4,916 Likes: 63 | 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.
Brian, stage 4 oral cancer survivor. OCF Founder and Director. The first responsibility of a leader is to define reality. The last is to say thank you. In between, the leader is a servant. | | |
#38211 02-20-2005 05:27 PM | Joined: Feb 2005 Posts: 5 Member | OP Member Joined: Feb 2005 Posts: 5 | 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 | | |
#38212 02-21-2005 04:35 AM | Joined: Aug 2003 Posts: 1,627 Patient Advocate (1000+ posts) | Patient Advocate (1000+ posts) Joined: Aug 2003 Posts: 1,627 | 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
SCC Left Mandible. Jaw replaced with bone from leg. Neck disection, 37 radiation treatments. Recurrence 8-28-07, stage 2, tongue. One third of tongue removed 10-4-07. 5-23-08 chemo started for tumor behind swallowing passage, Our good friend and much loved OCF member Minnie has been lost to the disease (RIP 10-29-08). We will all miss her greatly.
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#38213 02-21-2005 05:32 AM | Joined: May 2003 Posts: 928 "Above & Beyond" Member (500+ posts) | "Above & Beyond" Member (500+ posts) Joined: May 2003 Posts: 928 | 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
Caregiver to husband Pete, Dx 4/03 SCC Base of Tongue Stage IV. Chemo /Rad no surgery. Treatment finished 8/03. Doing great!
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#38214 02-21-2005 05:33 AM | Joined: Jan 2005 Posts: 108 Gold Member (100+ posts) | Gold Member (100+ posts) Joined: Jan 2005 Posts: 108 | 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
SCC Base of tongue diag. April 04 Stage IV, mets to rt. neck multiple nodes 35 rads+8 boosts First recurrence Jan05. Rt.rad neck dissection Feb02/05. Recurred with bone mets in neck July 05. Committed to survival with dignity.
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#38215 02-21-2005 07:12 AM | Joined: Feb 2005 Posts: 5 Member | OP Member Joined: Feb 2005 Posts: 5 | 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 | | |
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