During my research of SCC of the neck, I came across some interesting links. Many are listed below (keep in mind, this was back in 1997, so some of this info may be dated - although still applicable in many cases!).  Nowadays, a Google search, or use of a good search tool like Copernic can find about anything.  The links and info below are arranged in categories accessible from the drop down list, or by simply scrolling down the page. Let me say that "I am not a physician." Nor do I want to be one. But I do consider myself educated. Before trying anything in addition to your standard treatments, please discuss your plans with your physician. Some things may actually interfere with the treatments that would otherwise be helping you!

Links frequently change, so if you find one that's bad, feel free to let me know. I'll remove it. I'll also add things, if I come across something new. Many of these links are also found throughout the text elsewhere on this site. I hope you find something that is helpful . . .

• National Cancer Institute - A premiere place to find cancer information. Some of my other links are to specific areas at NCI. Their phone number is 800-4-CANCER.

• American Cancer Society - Another well known organization for the battle against "the dragon." Their phone number is 800-ACS-2345.

• Health Gate - Health info. and Medline biomedical database search. Big.

• The American Medical Assoc. - The AMA on the web. If a doctor you are seeing or considering is a member of the AMA, you can find out information about him/her here. There is a lot of other info that can be had here as well.

• ONCOLINK - The University of Pennsylvania's great cancer site. I like this one. Lots of pertinent information here. Some of my other links are to areas on this site.

• Net Wellness - Here is a University of Cincinnati site that offers a nice service. Ask an expert. You can submit a question and a medical professional will answer.

• Ask Dr. Weil - You've probably seen his books in the stores, well you can also ask him questions online. An interesting site, with lots of other info.

• Medicine Net - This site will provide you with info on medicine side effects, medical term definitions, and another "Ask the Expert" service.

• CDC - Center For Disease Control and Prevention. Here you can find incidence rates, health info., etc.

• Richard Bloch's Site - I know you've heard of H & R Bloch. But did you know Richard Bloch was diagnosed with lung cancer in 1978? And was given only 3 months to live? Well, he beat that. And has devoted his life to helping others going through this battle. His "R. A. Bloch Cancer Foundation" site is very good. There is a lot of info for those trying to muster up the strength and confidence to fight it. Click on the link to check it out.

• The Mining Co. - The Mining Co has some real nice and comprehensive information on all aspects of cancer. Hosted by radiation oncologist Barry Tepperman, there is a good section on head and neck cancer too.

• ACOR - Association of Cancer Online Resources. You can get yourself added to a mailing list that will provide you with info delivered to your email-box. There is a head and neck cancer list for those of us concerned with this. I am a member of the list, along with over 150 other subscribers!

• PubMed - A nice search engine for finding something specific you are looking for, medically.

• SPOHNC - Support for People with Oral and Head and Neck Cancer. This is the web site for SPOHNC, and you can get info about subscribing to the newsletter (9 per yr.). Good info specifically for H&N cancer patients.  

• National Lymphedema Network - Here is a site devoted to lymphedema issues. Most lymphedema issues are breast cancer related, but this site has some good descriptive information about what it is, and what can be done about it.

• Cancer Links - Web site recommended by one of the guys on the ACOR Head and Neck Digest. Good stuff here . . . (thanks Ron!)

• Chemo Care - Scott Hamilton's chemotherapy site offers the latest chemo information for cancer patients and their families, caregivers and friends.

These links are directly related to squamous cell cancer of the neck. These are what I went looking for when I was diagnosed. I wanted to know all I could about it. I hope they help you in your search . . .

• Squamous Cell Photo - Want to see a picture of the little bastards (excuse my language)? Check it out. Here's another one closer up.

• Radical Neck Dissection - Here's an abstract that talks about standardizing the various modifications of the "classical" neck dissection.

• Head and Neck Neoplasms - Here is a list of many different abstracts regarding head and neck procedures. These run the gambit from squamous cell to rhabdomyosarcoma.
  
  
• Chemotherapy Injections - Gel Treatment with 5Fu - Here's a link to info on another application of a common chemotherapy drug for squamous cell cancer. Interesting...
  
  
• About Clinical Trials - NCI's clinical trials information (for physicians). I found it an interesting source of info about clinical trials in general. What they are. Phases. etc.
  
  
• The Oral Cancer Foundation - I received an email from Brian Hill of the OCF, a new site devoted to Oral Cancer.  This site will be growing in the near future.
  
  
• NEW!  The Restorative Dentistry Oncology Clinic - A non-profit site located in England, dedicated to addressing dental issues associated with oral cancer.  Dr. Vinod Joshi offers a dedicated means of providing answers to questions, information on oral cancer, and much more.
  

Gene Therapy

After hanging out in the ACOR head and neck digest, I have realized that pain management is a topic that I have overlooked on my site. Anyone undergoing treatment for cancer is likely to experience pain. However! There is no excuse for having to live with excruciating pain. It can be debilitating and result in a loss of will to carry on. Pain can be managed. If you are having a lot of pain, by all means talk to your doctor about it! DEMAND satisfaction!  

I had few good links for pain management, but they have gone dead.  I'll see what else I can come up with. In the mean time, here are a couple to check out.

• Pain Net - Dr. W. David Leak's site. A strong advocate of pain control, Dr. Leak offers info, including questions you should ask when choosing treatment providers.

• The Medicine Program - I really didn't know where else to put this one, but since the idea is to provide help with prescriptions, which could include those needed for pain management, I figured this was a good place. The Medicine Program helps people who can't afford their medication (i.e., no insurance that covers prescriptions), to work it out. The program works with doctors and patient assistance programs (based on your eligibility), to get you the medications you need. All you have to do is fill out the necessary online forms (or you can actually mail them in!), and you are on your way. The seemingly minor thing I like about this site, is that it also provides a phone number to call! Worth checking out, if you are in need . . .
  • The Medicine Program
    
  • P. O. Box 515, Doniphan, MO 63935-0515
    
  • Telephone: (573) 996-7300
    

  ---

• NCI Radiotherapy Glossary - Definitions for some of the terms you may hear.

• 3D Conformal RT - Here's some interesting information on a method of treatment that targets only the tumor, and saves surrounding tissue. Not widely available yet...
  

• Scandipharm - Is the name of a company that makes a couple of products I found helpful as I encountered the dreaded "dry mouth" and taste loss/sore throat during my radiation treatments. This link will give you a description of ScandiShakes (High calorie nutritional shakes). I must say, I couldn't find any drinks with more calories. Scandipharm used to market a product called MouthKote, however, it is no longer available on this web site. I found MouthKote to be very helpful during radiation treatments, so I contacted customer service at Scandipharm, and found out that info on MouthKote can be found by contacting the manufacturer: Parnell @ 1-800-472-4276.

• L'Hermittes Sign - Or L'Hermittes Syndrome. This is a side effect of radiation to the spine. I experienced this about 11 weeks post radiation. It is a condition where, due to the demylenation of the spinal cord, I experienced a tingling / numbness (not quite a "shock") down my spine, into the buttocks, and behind the knees. This happens when I stretch my neck by looking downward (i.e., chin to my chest). My L'MS lasted about a year (with some degree of "shock" remaining). My radiation oncologist said it could go 6-9 months typically, so I guess I am not too far off . . . Couldn't find a whole lot on this as it relates to radiation side effects. Most posts were related to MS. Take THIS LINK to read three abstracts that are from references given to me by one of the radiation therapists on the AOL radiatherapy message board on AOL.

• Ethyol (Amifiostine) - If you are getting radiation as part of your treatment, and the radiation field includes your salivary glands (i.e., parotid), you will no doubt be dealing with some very problematic dry mouth conditions (xerostomia).  One thing that became available after my own radiation treatment regimen was a product called Ethyol.  If taken prior to radiation treatment, it can help minimize the adverse effects of the radiation on salivary function.  From folks who used it, the majority say it helped.  Definitely, talk to your docs about it!

  Variations on a Theme: I want to mention the radiotherapy group on AOL. I found a lot of support there, when I really needed it. Good people, that have "been there." I found a lot of information there that wasn't "readily" available on the internet. My friend Jeri says the same is true in the cancer forum on Compuserve.

  In fact two new therapies I found out about, I discovered on the message boards.

  • One was Fractionated Stereotactic Body Radiosurgery. Sometimes it is referred to as the Staten Island Treatment. This promising looking treatment is supposed to be able to target 100% of the tumor, thus leaving surrounding good tissue unaffected. I think this method is so new that it's only available at, you guessed it, Staten Island University Hospital.

  • The other type of radiotherapy treatment I read about is called the Peacock System. This system has been around a little longer than the SI treatment. This is a type of 3D Conformal RT that uses technology to target specific areas (i.e., tumors) for radiation. The idea is to prevent tissue damage to surrounding "good" tissue. I understand that better than 70% of the targeted area gets the radiation, with ~25-30% of the surrounding good tissue getting irradiated as well. This method is supposed to be available in about a dozen cities(?). I don't have specific info on this one, but it looks to be similar to the treatment available at Staten Is., only a bit less accurate in targeting.

  The thing that attracted my attention about these two last modalities, are the fact that they may be an option for people that have to deal with a recurrence of their cancer. Standard treatments probably won't be considered to a previously treated area - in most cases. That leaves us with "not much" in the way of alternatives . . . If another tumor pops up in an area already irradiated one of these may be a possibility.

There are myriad promises out there which I have no idea of the efficacy of. I am only going to list some of the things that seem to be nontoxic, and supplemental. I chose to try some of these things, with the exception of Dr. Revici. "That" is another story, but some people may find his approach interesting. My criteria, was to not do anything that would interfere with the traditional treatments. Many of these have lots of testimonials, but no clinical documentation.

• NCCAM - The National Center for Complementary and Alternative Medicine (NCCAM). What's "officially" being done in alternative medicine areas.

• MSM - Methyl Sulfonyl Methane. Ah, sulfa drug you say . . . I found out about this one from our librarian at work. I listened to a tape full of "testimonials," and figured I'd give it a shot. This is supposed to scavenge free radicals and allow other vitamins to do their job better. It's supposed to help strengthen cells and promote healing. Check it out...? (I buy it locally)

• Selenium - I ran across a lot of talk about selenium as a preventive measure against certain types of cancer. Here is one interesting study that was the main basis for my adding selenium to my own regimen. As with any "good thing," too much can be bad for you, the recommended max is 200mcg/day.

• Coenzyme Q10 - I decided to take this antioxidant in addition to my two multiple vitamins/day because of this information.

• Essiac - If you haven't heard of it yet, and look into alternative therapies for cancer, you will eventually find this one. I started taking it at the beginning of my rad treatments. My tumor did shrink away to nothing, but was it due to Essiac. Or radiation??? Hmmmm. Or all of the above??? The fact of the matter is I ran out of Essiac, and wasn't able to find any more of the "real stuff." (From what I've read, don't bother with the Flor-Essence or Essiak liquid).

• Revici Therapy - Ah, Dr E. Revici. I may have found this compelling had I run across it on my own. But, I found out about it via a real pain in the butt guy that always invaded the radiotherapy board in AOL, causing trouble - under the guise of BeWel. Revici may have just been given a bad rap, but there seem to be pros and cons for his "lipid balancing" therapy. Judge for yourself . . .

Some of the links in this section have gone bad and have been removed.  I'll need to find some more.  As for the zinc link (no pun intended) - this could be important, since you may well lose your sense of taste during the course of radiotherapy.

• Zinc - I found out late in my radiation treatments that supplemental zinc may help to return my sense of taste. This information describes dose amounts and what taste and smell have to do with zinc. Interesting.

No one should have to go through a diagnosis and treatment alone. Hopefully, you have a wonderful family that will help you through this difficult time. I know I couldn't have made it without mine! Even so, I found a great benefit from sharing with others that have gone through this too. It really helped me to put things into perspective. Use the news groups (the radiotherapy messageboard in AOL was a tremendous help to me). And there are probably many local support groups in your particular area. But here are some places to start . . .

• The Wellness Community - I found this to be very helpful. You can discuss anything within your "group," and it doesn't go outside the room. I found that I didn't have it nearly as bad as many other people. Recommended.

• CancerCare - You can get immediate support help here, if needed. Other good resources too.

Since I am placing links here, I thought I'd add this link to the Barrett Center Radiation Dept. photo gallery.

• The Folks That Helped Me Fight My Cancer - This is actually a link to another page on my own site that has photos I took (and my wife took) of my radiation oncologist, rad tech, nurse, equipment, and me during a treatment. These will give you an idea of what you are dealing with when you sign up for a "course in radiotherapy!"

There are many, many, many, personal pages out here devoted to cancer. And here I am putting up another one. But, we do it because we want to help others going through this insidious disease. Here are a few I like . . .

• Cancer Guide - Steven Dunn has done a wonderful job on this site. I've communicated with him, and found him to be knowledgeable and sincere. You'll like this one.
  
  
• H E R E - is an email link to PamelaRNC. Pam is an email friend that I have made in recent months. Her brother was diagnosed with SCC of the neck. She has been very supportive of him, and during his course of treatment, has helped him face many hurdles in the form of paying for treatments, etc. Pam gives her credentials as an RN certified in psych and mental health. She has graciously offered herself as a resource to anyone that may have a question about these issues. My personal feeling is that any time we are in need of answers, check out the possibilities!

• Although this is not really a personal page, I received a message from one of the ACOR list survivors telling me his personal experience with Intra-Arterial Infusion. Very basically, this is a treatment that injects very high doses of a chemotherapy drug directly into a tumor. Here is some info on it from Medline:  Click   I thought this would be a good place to share Chuck's experience, so if you are considering this, or are interested in learning more, please check it out!  (Click your "Back" button to come back) Chuck's IAI experience.  I hope to be able to add Chuck's story to my Survivor's Stories page in the future.
  
  
• NEW! - I recently received an email from the brother of a woman who lost her life to breast cancer.  All cancer is tragic.  And its effect on the families of the victims is powerful.  I usually only focus on head and neck cancer for my site, but, I feel Diane's insight and wisdom are born out in her writing.  She wrote many thoughts down while she was facing a terminal prognosis.  Not many people have the inner strength to do this.  I know most of what I have tried to provide on this site is encouragement and hope for beating your cancer.  But, what if the prognosis is not so good?  Like in Diane's case?  Well, if that is the case for you, then you may find strength in what Diane shared as she prepared for the final transition we all have to make one day.  Diane's Story