| 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)
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 |
