| Title/Author | Topic | Article Type |
| Bob Kanjian | Back In Game | Experiences |
| Hotlanta | IAL-AM VI | News & Events |
| Better Sleeping | Hints Sleep | Advice |
| Cancer Drug | Paclitaxel | Medical |
| Teen Smoking | Movies | Tobacco |
| Throat Cancer | Asbestos | Research |
| Fund Raiser | WW Mouse Pad | News & Events |
| GERD | Baclofen | Research |
| Welcome | New Members | News & Events |
Internet Laryngectomee Support
July 2003
Bob Kanjian - Back in the Game
Bob Kanjian had been a detective with the Washington,
D.C. Police Department. He retired in 1986 and took a part-time job as a
District Court Commissioner in neighboring Maryland. He also continued in a
passion he had indulged since 1978-- being a soccer referee. Each year he
refereed the spring and fall soccer sessions in the D.C. area in games ranging
from junior high school to the professional level.
Bob wrote, "In 1996, my wife Carol and I became snowbirds and retired to
Florida. I continued to travel north for the spring and fall soccer seasons.
In 1999, my wife started bugging me about my hoarse voice. I shrugged it off,
blaming the poor air quality in the area and 'allergies.' In 2000, my friends
started asking me about my raspy voice. I still maintained it was an allergy
caused by the air up north. When my daughter got married in November of 2000,
she pleaded with me to go and have my 'allergies' checked out BEFORE she got
back from her three week honeymoon."
Bob's new primary care doctor took a look and sent him to an ENT who
scheduled a biopsy. The diagnosis was positive for cancer of the vocal cords
and he underwent 33 radiation treatments. "My prognosis at that time was that I
would fully recover with a 90% cure rate. I returned every month to my ENT for
a checkup and was looking forward to my one year anniversary so that I could
then see him every TWO months. Not to happen! At the 11 month checkup he told
me that the LEFT vocal cord looked inflamed."
Another biopsy and MRI (Magnetic Resonance Image) and he was told that he
needed to do a vertical hemi-laryngectomy surgery*. A second opinion was sought
from a doctor at famous Johns Hopkins Hospital in Baltimore, Maryland, and the
decision was made for a total laryngectomy. Along with the larynx, 100 lymph
nodes were removed, all of which were negative for cancer. Along with the
laryngectomy, his doctor did the TEP (Tracheo-Esophageal Puncture). The
puncture initially served as the route for his feeding tube before his
prosthesis was installed two weeks later. He spoke immediately.
But along with the good news of the success of his surgery and TEP, he was
told some very bad news. He was told that he would never be able to blow a
whistle with his mouth. "This was a devastating blow to me as I had envisioned
returning to soccer as soon as I had healed. I was NOT ready to hang up my
cleats!" Close friends and family members began to work on ideas for an
alternative whistle.
"My daughter discovered a 2 1/2 ounce can of compressed air small enough to
fit nicely in the palm of my hand. Other friends tried many prototypes. My
friend, Jack Whyte, was able to find a way to attach a whistle to the top of the
air can my daughter had found. This made it feasible to use in a game
situation. NOW, I was ready to return to the soccer field. Just before
returning to Maryland, I was practicing with the "Whyte" can whistle and it
wasn't working very well. In frustration, I tried to blow a whistle with my
mouth. I was able to get a good sound. I continued to practice and was able to
blow loud enough for me to be able to use it in a game situation. I decided to
scour the Internet for 'pea whistles' that purported to be VERY loud. I can now
blow the whistle adequately enough to be able to referee a game by occluding the
cassette in my stoma. I still keep a more perfected "Whyte" whistle in my
pocket in case my seal should ever fail me (which is a constant possibility).
During pre-game meetings, I use my FreeHands and then, just before the game
begins, I switch to my Hi-Flow cassette." (The Hi-Flow filter cassette is from
ATOS.)
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Getting Enough Sleep?
How much sleep do we need? If you can answer "no" to all of
these questions you are probably getting enough sleep.
- Do you sleep longer on the weekends, or any time during the week so as to
"catch up on your sleep?"
- Do you feel drowsy or nod off at any point during the day?
- Do you fall asleep within 5 minutes or less? (Those who are getting enough
sleep tend to take from 10-20 minutes).
According to the experts, we need four or five complete sleep cycles each
night. A sleep cycle consists of deep sleep, or NRS (Non-REM Sleep), and REM
(Rapid Eye Movement) sleep.
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Stages of Sleep
Stage 1 is REM sleep (also called "Delta" sleep). Your eyes
move back and forth behind your eyelids. This occurs after about 90-100 minutes
after falling asleep. The blood pressure rises and heart rate and respiration
speeds up and becomes uneven. Your voluntary muscles are paralyzed. This stage
is considered the most restorative part of sleep. Our most vivid and memorable
dreams occur during this stage. The percentage of REM sleep each night declines
with age.
Stage 2 is "light" sleep. It is characterized by muscle relaxation, slowed
heart rate, and no eye movement. The body is preparing to enter into deep
sleep.
Stage 3 and 4: Also characterized by NREM, these two stages involves periods of
deep sleep with Stage 4 being more intense than Stage 3. Your body temperature
drops and muscles relax. You are completely asleep.
These stages repeat themselves throughout the night.
Instead of the four stages described above some researchers divide sleep
into five or even six stages including the falling asleep and waking stages.
Hints for Better Sleeping
There are a number of things which researchers have found
help maintain a good sleeping pattern. Some of these include:
- Keep regular hours by going to bed and waking up around the same time. This
is necessary because we have a built in body clock called "circadian rhythm"
which is controlled by hypothalamus at the base of the brain. It governs the
body's daily alteration between sleep and being awake. If we significantly
change our sleeping patterns such as gong to bed early one night and late the
next our body clock becomes "confused." One suggestion for resetting" the body
clock is to go out early in the morning and stand facing the sun for 15
minutes. The presence or absence of light works as a trigger to inform the mind
whether it should be awake or asleep.
- Develop a "sleep ritual" by doing the same things each night. This cues your
body that it's time to settle down for sleep. One expert suggests that if you
can't fall asleep within 20 minutes or so, get up and do something boring until
you feel sleepy. And don't expose yourself to bright light at this time since
this tells your body that it is time to wake up.
- Exercise regularly, but not too close to bedtime. Exercise relieves tension.
Some experts say to exercise no closer to bedtime than four hours.
- Unwind early by dealing with worries and distractions several hours before
bedtime. Some find that reading a light novel or listening to soothing music
before bed can help them fall asleep. Rather than go over the things you need
to do tomorrow in your mind, write them down.
- Make sleep a priority even when you're tempted to stay up late.
- Sleep comfortably. Make sure you have a supportive mattress with adequate
foundation. Some experts say that 75% of a bed's supportive characteristics
are degraded within ten years so buying a new bed may improve sleep. Other
authorities suggest that you should only use your bed for sleeping and sex and
not, for example, watching television or doing work. This helps your body
associate being in bed with just sleeping.
- Use a cervical (neck), or other supportive pillow.
- Create a cool, quiet, dark and restful sleep environment. Light and sound
control are particularly important. For some, wearing earplugs and a mask
help. Research says that most people sleep better in a cool room than a warm
one.
- Avoid drinking alcohol shortly before bedtime. Alcohol disrupts and causes
fragmented sleep.
- Cut down on stimulants such as caffeine during the evening, and do not eat
close to bedtime. The exception would be if you stomach is empty. This can
produce sleep problems and a light snack may be called for.
- Have sex. Research says that it produces the natural painkiller endorphin,
and aids in relaxation.
To Nap or Not to Nap
The experts disagree about whether naps are necessary or
desirable. Some say they are a bad idea and always interfere with night time
sleeping. But those who support them typically recommend that they should be
for less than an hour (20 minutes may be all you really need), and should come
before 3 P.M. so they do not interfere with night time sleeping.
(Information for this article came from the British Broadcasting Corporation,
Chiropractic Wellness & Fitness Magazine, and Stanford University.)
Cancer drug Paclitaxel Enhances
Chemotherapy
The management of patients which locally advanced head and neck cancers may
be transformed by studies which have shown that adding the drug Paclitaxel to
the standard chemotherapy completely wipes out tumors in about 1/3 of patients.
Additionally, patients given the drug combination are more likely to keep the
ability to speak and swallow.
The other cancer drugs are
Cisplatin and 5-fluroucil (5-FU), and the
researchers theorized that the addition of the Paclitaxen would further shrink
the tumors. The use of the three drugs together produced a 32% total remission
compared to a 13% remission rate with the standard chemotherapy. The larynx,
pharynx and tongue were preserved in 88% of the patients compared to 75% with
the traditional chemotherapy using the two drugs.
"This is a very important study that will very likely change the way head
and neck patients are managed," said Robert Mayer, MD, director of the Center
for Gastrointestinal Oncology at Dana-Farber Cancer Institute in Boston,
Massachusetts.
These research results were presented at the annual meeting of the American
Society of Clinical Oncology.
Teen Smoking Linked to Movies
Are teenagers more likely to start smoking if they
see movies whose stars smoke? The answer is “yes” according to the results of
research published recently in the prestigious British medical journal, the
Lancet. Teens who watched the most movies with smoking were almost three
times more likely to start smoking than those who watched the fewest number of
movies with smoking.
“The study provides the strongest evidence to date that smoking in movies
encourages adolescent to start smoking,” said the lead author.
Asbestos and throat cancer
The experts tell us that cancer of the larynx is linked to smoking, alcohol
consumption and exposure to a number of chemicals including Agent Orange, but is
there also a link to asbestos?
An article in June issue of Clinical Otolaryngology reviewed the
available research. Exposure to asbestos is a known cause of
cancer. But
whether it is involved in larynx cancer has been debated for at least three
decades.
Asbestos is a naturally occurring mineral which continues to be mined in
Australia, Canada, Russia and South Africa. Asbestos has most commonly been
used as insulation material and a fire retardant. Asbestos is only dangerous
when it becomes airborne and is inhaled. Significant exposure causes scarring
of the lung called Asbestosis. This can lead to cancer of the lining of the
lungs called Mesothelioma, or to malignant tumors of the bronchia.
The authors of the study conclude that the weight of the evidence from the
studies does not support a direct link between asbestos exposure and the
development of larynx cancer. This is not the final answer on this question,
and further research may shed more light on the issue. The incidence of
asbestos-linked cancer is increasing, particularly in European countries.
(Information for this article came from Clinical Otolaryngology and the
Asbestos Institute.)
New WebWhispers Item Available - the WW
Mouse Pad
WebWhispers members who attended Atlanta IAL got a nice surprise when they
visited the WW table. They were able to pick up a free WW logo mouse pad,
courtesy of Jim Lauder. With the additional donation of 400 of these mouse
pads, we are now able to offer them for sale at $5.00 each. The proceeds
will go into a fund to offer financial help for some members to attend the IAL.
We are pleased to have permission to call this fund "The Edmund Lauder Support
Fund" and details will be forthcoming at a later date. Checks for these
mouse pads should be made payable to WebWhispers and sent to:
Terry Duga, Treasurer
6115 North Park Ave.
Indianapolis, IN 46220
Thanks to Jim Lauder and all of the vendors who
contribute to the WebWhispers' cause.
Drug Shows Promise for
Treating GERD
A drug, Baclofen, which had previously been used for another purpose, has
been added to those used in the treatment of GERD, according to Laurie Barclay,
MD.
Patients treated with Baclofen for four weeks showed significant
improvement in the decreased number of episodes of GERD as well as improved
levels of stomach acidity. Baclofen is a prescription drug and those interested
should see their doctors.
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(Submitted by George Cocking who reports that the poem is read at each meeting
of his
local support group where members are learning traditional esophageal
speech).
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William Adams Detroit, MI AdamsWJ@aol.com |
Gurmit K. Bachher, PhD - SLP Mumbai, India gurmitlatika@rediffmail.com |
Rosemary Bacino - Caregiver St. Anne, IL rodi@keynet.net |
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Laura Battiata - SLP Kensington, MD (WRAMC) Laura.Battiata@na.amedd.army.mil |
Marusya Bociurkiw - Caregiver Vancouver, BC, Canada mbociurk@sfu.ca |
James Bolton Baton Rouge, LA JGBolton@cox.net |
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Beverly Brown Spring Valley, CA wm.brown@cox.net |
Lynn Coppedge - SLP Arden, NC coppedges@hotmail.com |
Stephen Cox Bethany, OK scox295429@aol.com |
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Rene Cuisia Manila, Philippines rvlc@pacific.net.ph |
Shawn Davis - Vendor (Romet) Monmouth Junction, NJ ShawnDavis111@cs.com |
Gene Dietrich Houston, TX flyer_59@hotmail.com |
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Francis Emele Norristown, PA FEmele4603@aol.com |
Gary D. Ford Lancaster, MA gjford@attbi.com |
Kelli Hancock - SLP Brisbane, Australia Kelli_Hancock@health.qld.gov.au |
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Joel Jackson Panama City, FL jenjak@knology.net |
Gerald King Lowell, AR DrannyK@aol.com |
Juanita Larracey Machias, ME delshayusa@prexar.com |
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Roy Lewis Cannon Hill, Qnsld, Australia Welford01@optusnet.com.au |
Paul Markey Sun City, AZ pryekram@juno.com |
James Meloy Tacoma, WA jfmeloy@harbornet.com |
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Allegra Nasr - SLP Grad Student UNC, Greensboro, NC aana@uncg.edu |
Kathy Rayca - SLP Philadelphia, PA rkrayca@yahoo.com |
Emer L. Rojas Quezon City, Philippines pres@nsclub.net |
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Bill Romanello Dania Beach, FL willor@bellsouth.net |
Michael Sanchez Sugar Hill, GA msanc@aol.com |
Joseph Sebok Westland, MI Janet@sebok.net |
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Russell Simpson Coral Gables, FL RGS2BFS@aol.com |
John Thomson West Valley City, UT jsthomson1@msn.com |
Roland Tomas Quezon City, Philippines rei8@yahoo.com |
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Cmdr. Shamu Varma (Ret.) New Delhi, India shamuv@vsnl.com |
Julia Weinsoft - SLP Los Angeles, CA julia.weinsoft@tenethealth.com |
Jerry & Jan Wilt Ingram, TX jwilt@omniglobal.net |
