Title/Author Topic Article Type
Photodynamic Therapy Cancer Treatment Medical
IAL-Atlanta Why Should You Go? News & Events
Nonsurgical Treatments Functional Outcomes Medical
Head/Neck Patients Social Issues Education
Larynx Cancer Diet Education
Welcome New Members News & Events

 


Internet Laryngectomee Support
May 2003

Lighting the Way - Photodynamic Therapy

     New larynx cancer treatments have helped to cure the cancer while preserving the larynx.  In addition to improvements to radiation and chemotherapy combined with radiation treatments, a number of newer surgical procedures and tools have also helped in this process.  A newer surgical procedure is called photodynamic therapy (PDT).

     The PDT treatment involves the intravenous injection of a drug, porfimer sodium (Photofrin?).  The drug is attracted to cancer cells and makes them vulnerable to light. After two or three days for the drug to clear healthy cells, the patient is taken into surgery.  A laryngoscope is passed down the throat followed by a fiber-optic wire, and a red laser light is directed at the tumor.  The light activates the drug and kills the cancer cells.  Treatments typically last less than ten minutes.  Unlike more traditional surgical approaches which involve cutting out the cancer, PDT is very exact and only cancer cells are killed.  An additional benefit is that the treatment does not interfere with any other treatments the patient may receive prior to or after PDT treatment.

     ?Photodynamic therapy is an excellent weapon to use in conjunction with chemotherapy, surgery and radiation. Photodynamic therapy can control local cancerous disease with little or no side effects, which profoundly improves patient pain, ability to perform activities of daily life and overall comfort,? said Dr. Gordon Downie, a pulmonologist at the Brody School of Medicine and medical director for the Photodynamic Therapy Center in Greenville, South Carolina.

     PDT is only used for tumors which are at lower stages since the light cannot penetrate deep into tissues.

     The major side effect of PDT is sun sensitivity and patients are at risk for sunburn.  Because the drug can take up to three months to completely leave the body, patients must wear long sleeves, broad-brimmed hats and gloves to protect against second-degree burns from the sun.  In addition to larynx cancers, PDT is also being used with some types of cancers of the mouth.

     According to Dr. Ron Allison of the Jenkins Cancer Center, ?It?s a revolutionary therapy because you?re treating cancer with light. Studies have shown that PDT has a lower morbidity (death) rate than other cancer treatments.  It has a dramatic potential which hasn?t been realized yet.  And what we hope to do through our multi-disciplinary approach to photodynamic therapy is research the potential for this therapy and make it as successful an option for cancer patients as possible.?

Y'all Come to Atlanta! - Attending an IAL Annual Meeting

     A large turnout is expected at this year's International Association of Laryngectomees Annual Meeting and Voice Institute in Atlanta, Georgia.  The Voice Institute begins on June 24th, and the Annual Meeting begins on June 26th.  Both conclude on Saturday, June 28th. 

     But why would laryngectomees come from literally all over the world to meet with one another?  There are lots of reasons.  Here are a few of them:

WebWhispers

     Many WebWhispers come to the IAL Annual Meeting to meet in person individuals they have come to know through e-mail and other interactions through our website.  Other than traveling all over the world yourself to meet individuals, there is no other single place where you can meet so many fellow WebWhispers members than the IAL Annual Meeting.  A highlight is the annual WebWhispers reception (sponsored by Bruce Medical) and dinner on Friday night.

    It's a great vacation away from the cares of the world and, two, it's great to be able to put faces with names, and three, enjoy great fellowship such as the WW dinner. (Charles Lamar)

     The IAL annual meeting is likely the only venue wherein WW members can actually meet, face to face, to exchange ideas, ask questions, make suggestions, learn, and get to know each other in a medium other than e-mail.  The club can then hopefully function better throughout the year due to this unique opportunity to personally interact and share.  (Dutch Helms)

The Social Scene

    There are lots of Annual Meeting social activities beginning with the Meet and Greet Reception on Wednesday.  The traditional sing-a-long is set for Thursday night where all interested sing the oldies.  The Fun Show (an original production created each year for the occasion and performed by larys) takes place on Saturday afternoon and showcases many of the talented individuals in the group.  The cocktail party that night precedes the always fabulous culminating social event, the Annual Banquet and Dance. 

     The city was fun to explore, the hotel was great, the area restaurants were great, and, most importantly, meeting fellow larries and their spouses, friends, and family.  (Bob Herbst)

Stuff

     The major vendors and distributors of laryngectomee products will be in attendance displaying their wares including new products.  Three of the vendors perform free routine maintenance on artificial larynges.  The Siemens technician, Lenny Komar, will be there to service Servox ALs and to convert older battery chargers to work correctly with the new type batteries.  Also performing this same service on Servox instruments will be Jim Lauder, who will also make simple repairs on other brands of ALs.  Jim was the first vendor to offer free AL service at the IAL convention.  Griffin Labs will also perform the same service on TruTone and Solatone ALs.  Since some vendors charge up to $200 for this service, this alone can make up for a significant portion of the cost to attend.

    Many vendors also run raffles on ALs, amplifiers, and other expensive items, and many provide free samples of less expensive items.  The IAL Auxiliary also runs a raffle, silent auction, and virtual yard sale on a number of very nice donated items.  And towards the end of the convention the prices are dropped to virtual giveaways.  Proceeds go to the local club.

     I found many interesting vendors and they answered my questions with knowledge and accurately.  If they didn't, they found someone who could.   (Ms. J. Ray)

     Seeing the products firsthand is much better than a catalog.

Organizational Activities

    If you are attending as a Delegate or have any interest in the internal workings of the IAL, you may attend any committee or other meeting of the Association.  However, if you are not a Delegate or member of the committee in question your ability to participate other than as an observer may be limited.  Committee meetings begin on Tuesday afternoon.  Election of IAL officers and new Board members as well as bylaws amendments and reports by the officers and committees occurs at the Delegate assembly on Saturday afternoon.  The Board of Directors meets on Sunday after the Meeting.

Education

     The heart of any Annual Meeting is education.  Whether you attend the Voice Institute or not, the program always contains basic information about larynx cancer and treatments, the newest therapies and technology, and also virtually every aspect of laryngectomee rehabilitation.  Conference planners seek out speakers who can address cutting edge developments in laryngectomee treatment and rehabilitation.  World renowned experts in laryngology attend and share their knowledge.  For example, you will hear from the co-inventor of the modern TE prosthesis Dr. Eric Blom about emerging treatments and new prosthesis development.  The keynote speaker will be describing, and possibly demonstrating, a new electronic artificial larynx being developed at Harvard University.

     I go to learn the latest news related to laryngectomee rehabilitation. (Mary Jane Renner)

     You learn a lot and you can see and hear the updates for laryngectomees.  You can ask any questions and you'll be sure to have an answer.  (Wilda and Rae Provost)

     Listening to people like Jim Shanks teaching (speech techniques and putting people at ease) absorbing hints, tricks, and nuances that specifically help make our quality of life more normal and enjoyable(Bob Herbst)

Getting Personal Help

     Many laryngectomees come to the Annual Meeting (as well as the Voice Institute) to get help with problems they may be having.

     I finally went to the IAL last year in Nashville.  I waited ten years to do it.  Here (is a) practical reason for going: Irrespective of what type of alaryngeal speech you use, and how well you speak, you will learn things that make you a better speaker.  (Philip Clemmons)

    I attended my first IAL meeting for (several) reasons: I was eager to meet in person other female laryngectomees who spoke esophageally, and I wanted to see how they covered their stomas.  That meeting was like walking into sunshine.  (Elizabeth Finchem)

     At that time, I could speak only with my Servox, although I had a TEP.  But with the help I got at the Voice Institute plus all the encouragement and "mentors," I now manage just about full time with my TEP.  (Libby Fitzgerald)

     I have been trying to learn esophageal speech and was having some problems.  I had sessions with Tanya Eadie, Jim Searl and Shirley Salmon, and I felt much better about it.  Then Jim Shanks talked to me and assured me that I could do it.  (Doris Gifford)

The Voice Institute

     People come to the Voice Institute to get help for themselves.  But they also come to obtain a significantly higher level of understanding about laryngectomee rehabilitation out of their desire to learn more, but also in order to help others and become a part of the rehabilitation of fellow laryngectomees.

    As for the Voice Institute, it is the best.  They worked our rear ends off, but we learned more about laryngectomees and our voices than you can imagine unless you have been to one of these.  You will never regret going there. (Pat Sanders)

     I came to the Voice Institute to get TEP speech.  All of my local medical resources had failed.  Voice Institute faculty SLP Drs. Carla Gress and Dan Kelly got me started talking.  I got TEP voice AND hope.  (David Blevins)

     As a VIP (at the Voice Institute), I got knowledge from meetings and one-on-one contact with an SLP.  My plans are NOT TO MISS another one, as long as I am able.  (Judy Ramboldt)

Psychological Support

     Many laryngectomees are, or at least feel, isolated.  When they get together with other larys they can relax among people who understand them as no one else may.

     Way back in the beginning, it gave me back my self-esteem as a person.  It was the one and only place I could go where I was part of the majority and not the minority.  I met people like me and had my questions and fears answered.  I could share with other laryngectomees things I could share with no one else.  It met and continues to meet my needs on an emotional level.  (Barb Nitchneider)

     First you realize you're not alone, and you meet great people from everywhere.  The IAL is a big family and I'm proud to say I'm a part of it. (Wilda and Rae Provost)

     I have been extremely blessed with the ability to talk (TEP), live a relatively normal life and continue to have a wonderful caregiver (WIFE) to share my days with.  I see others at the IAL that do not have speech as good as I, can't move their body parts as well as I, have difficulty eating and, in general, do not have the freedom to enjoy life like I do.  My cup runneth over. (Max Hoyt)

     We met a lot of people with more problems than I have, some with less, new larys and old larys.  We need to have the reinforcement that we are not alone.  There is always someone to reach out to and that someone will respond. (Judy Ramboldt)

     There is plenty of time to register to come to the 2003 IAL Annual Meeting in Atlanta.  Very inexpensive airfares are available.  You can begin the process of registering to attend at this web address:

http://www.larynxlink.com/Atlanta/Atlanta_1.htm

     I have met many laryngectomees via WW and conventions over the past 6 years and I have never met one who said "I'm sorry I went to that convention."  Especially for the new laryngectomee, if it's at all possible -- remember that old commercial - TRY IT, YOU'LL LIKE IT!! (Stan Mruk)

Nonsurgical Treatments - Functional Outcomes

     The April issue of the Laryngoscope reported the results of a study of individuals who had undergone nonsurgical treatments for stage 3 and 4 larynx cancers.  The study sought to measure the outcomes on voice quality and other factors.  Expert listeners were used to judge post treatment vocal quality, and other techniques were used to measure secretion control (mucus, saliva), stability of the airway, and ability to handle a normal diet.

     The experts concluded that the patients maintained functional but abnormal voice, speech, and swallowing abilities after treatment.  The vocal abnormalities were judged by the experts to be "moderate."  Of interest is that the patients rated themselves as only mildly impaired in terms of emotional, physical and functional handicapping effects from the treatments; and they reported improvements over time in their voice quality and swallowing functions. 

    The study concluded by recommending a battery of measurement devices be used in assessing functional outcomes in patients undergoing nonsurgical treatments for larynx cancer.

Disfigurement, Gender, and Social Support for Head/Neck Patients

     A recent issue of Head and Neck reported on research carried out in Canada.  It was designed to measure the psychosocial impact of disfigurement caused by treatment for head and neck cancers in men and women. 

     The group generally showed high levels of life happiness, low levels of depression, and positive feelings of well-being.  Women demonstrated higher levels of depression and lower life happiness.  Patients with greater disfigurement were more likely to be depressed.  The amount of social support available appeared to help women deal with disfigurement, but was not a significant factor for men.   The study authors concluded that "women with head and neck cancer who experience low social support and face disfiguring treatment are at greatest risk for psychosocial dysfunction."

Diet a Cause of Larynx Cancer?

Fiber

An article appearing in a winter issue of the Annals of Oncology reported another possible connection between diet and cancer.  Italian researchers found a link between fiber intake and the development of larynx cancer.  It was found that diets rich in fruits and vegetables were associated with a reduced risk of cancer.  Those who consumed the highest amounts were 70% less likely to develop laryngeal cancer than those who consumed the lowest amounts.  Patients getting a large quantity of their fiber from vegetables were 80% less likely to have laryngeal cancer, while those consuming large quantities of fruit were 50% less likely.  According to the study, fiber from grain sources did not provide any protection from laryngeal cancer possibly because the starch in refined cereals may cancel out the beneficial effects of fiber from these sources.

     Exactly why fiber intake is associated with a lower risk for laryngeal cancer is not clear.  One possibility is that increased fiber intake just reflects a generally healthier lifestyle for these individuals.  Also, when people eat more fruits and vegetables they typically eat fewer foods associated with the development of cancers such as fats, proteins and refined grains.  The study authors concluded, "It's difficult to say if the protective effect observed could be attributed to fiber alone.  Possibly, this could be due to a combination with other micronutrients (such as vitamin C and beta carotene) that are found in fruits and vegetables."

     Increased consumption of fruits and vegetables has been shown by other research to be beneficial in preventing a number of life-threatening medical conditions including colon cancer and heart disease.

Fried Foods

     A study carried out in Switzerland and Italy and published in the British Journal of Cancer reported on the relationship between the development of larynx cancer and the consumption of fried foods.  A significant increased risk was found for high consumption of fried meat, fish, eggs and potatoes.

Welcome New Members 

     We welcome the 16 new members who joined us during April 2003:

 

Diane Ashe
Rockville, CT
Ashediane@aol.com
Ed Blake
Kitchener, Ont., Canada
eblake49@hotmail.com
David Buck
Arlington Heights, IL
Djbuck37@aol.com
Tom Denison
Union Hill, NY
cpupwr@frontiernet.net
Janet Engels
West Wareham, MA
Nanajana325@aol.com
Robert Halterman
Montgomery, IL
Lhalterman7@aol.com
Adrian Hueppi
Zuerich, Switzerland
  admin@kehlkopfoperiert.ch   
Darlyne Kelleher - SLP
Hackensack, NJ
DKelleher@humed.com
Jim Leiderman
Birdsboro, PA
jleider@yahoo.com
Erin Leu - Caregiver
Albuquerque, NM
erileu@yahoo.com
Terry Moon
Elora, TN
harvest@cafes.net
Francis Newton
Dunedin, FL
  franknewtonjr@knology.net   
Joseph Partin, Sr.
Petersburg, VA
JWPartin928@aol.com
Jill Vater
Turbeville, SC
watersj@ftc-i.net
Don Wilson
Las Vegas, NV
ImElcheepo69@yahoo.com
  Imti Yanger
  Kohima, Nagaland, India   
imtiyanger@neline.com
 

 


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WebWhispers Nu-Voice Club
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