||Dodging The Bullet
|Oral & Head & Neck Cancer
||Cancer Awareness Week
||News & Events
||Outcome Of Cases
|Tobacco Settlement Money
|New Communication Device
||News & Events
Internet Laryngectomee Support
Robert Skimin - Dodging the Bullet
How effective is radiation or chemoradiation in curing
larynx cancer? The statistics from groups like the American Cancer Society give
figures in the 90 percent rage for lower stage cancers, and in the 50-70 percent
range for more advanced cancers. And we are told that the use and effectiveness
of non-surgical approaches to treating larynx cancer are continuing to improve.
But ask a group of laryngectomees how effective radiation or chemoradiation
is in curing larynx cancer and you are likely to hear a very different story,
since, for those who had it in hopes of avoiding the laryngectomy, it failed.
We have been told that those whose cancers are cured just return to their lives
and generally do not join larynx cancer support groups, so we are just not
likely to hear from them. But just who are these individuals whose larynx
cancers were cured with radiation?
One is them is Robert Skimin.
Dodging the Bullet
He was told in 1991 that the tickle in his throat was probably the result of
GERD (Gastro-Esophageal Reflux Disease). So he raised the elevation of the head
of his bed, ate earlier in the evening, and took medications for his acid
stomach. But the tickle continued, and one day he noticed a tiny lump on his
neck. A biopsy confirmed that he had larynx cancer, and his physician told him
that removing his larynx was the only realistic chance to save his life. At the
time, he was on the road promoting his latest book, Renegade Lightning.
Robert Skimin had retired from the U.S. Army and had become a well known
historical novelist. One of his books, Apache Autumn, had been nominated
for the highest honor, the Pulitzer Prize. A major part of the job of
authors is traveling and talking about their books via the "promotional tour."
He had also conducted seminars
and given lectures on writing and publishing. The diagnosis and potential loss
of his voice rocked his world. "I was one of those people who feels
indestructible," he said. "I was facing my own mortality. I was devastated."
A physician friend suggested getting a second opinion from the top ranked U.S.
cancer hospital, the M. D. Anderson Cancer Center in Texas. He learned of a
radiation treatment regime being used there and was told it might give him a 75%
chance of recovery, and with his larynx intact.
"The moment I heard that, my spirits just shot through the roof. 'You take
care of the 75% and I'll take care of the other 25%,'" he told his doctors. He
continued to write as his treatments stretched over two months. "Writing
occupied my time and my mind. There was no way I would be a moping patient.
This was something I had to go through to get on with my life," he recalled. He
listened to motivational tapes and read books which offered hope. "When you're
in that unknown, it is absolutely vital to find peace of mind. Confidence does
it for me. I had no doubt that this was going to work."
Battles and Writing
Robert Skimin was a talented artist, but he left his
hometown in Ohio to enlist in the Army. He was just 18. He became a
paratrooper, artillery officer and pilot of light aircraft and helicopters.
Decorated several times, he became a Green Beret and one of the Army's youngest
officers. But another battle for Robert was with the bottle. And in 1976 he
wrote a book about alcoholism, The Booze Game. His own battle with
alcohol gave him an additional perspective on General U.S. Grant when he wrote
Ulysses. Ironically, former President Grant died of mouth and throat
Among his other books include a four volume adventure series, Soldier
for Hire; Chikara!, a novel of a family from Hiroshima, Japan, which
comes to America; Gray Victory, a novel which explores what might have
happened had the South won the Civil War; Renegade Lightning, a World War
II aviation novel; The River and the Horsemen, about Custer's battle at
the Little Bighorn;
Custer's Luck, which provides an "alternate ending"
to the life of Custer; and Violent Sky, a sweeping story of aviation in
both World Wars. Works in progress include Derzhava, a novel of 20th
century Russia, and a book about military heroes.
Cancer-free for more than a decade, nicotine free for two decades, and
sober for more than 33 years, he said, "No one knows more than I how fortunate I
am to have kept my voice and my life for these many years. For those not so
fortunate, I can only say, 'Thank God for what you have, and think of how you
can give something back...if it's just sharing your story.'"
(Based on a story appearing in the M. D. Anderson Network Newsletter.)
Still another battery powered
humidity gauge is now available. This one measures indoor and outdoor
temperature (or the time), as well as indoor humidity.
Since dry air is a major cause of problems for laryngectomees, many find
that adding humidity to indoor air and monitoring it can translate into
increased comfort. A good indoor humidity level for laryngectomees can be as
high as 55-60% (maximum) without any adverse effects on indoor air quality or
the comfort of others.
A comprehensive article on laryngectomee health/comfort and humidity can be
found in this issue of the WWJ:
The humidity gauge pictured cost under $20 at K-Mart
in the home and garden section.
Oral and Head and Neck Cancer Awareness Week
April 7-13th is Oral and Head and
Neck Cancer Awareness Week. Many community hospitals, clinics, and individual
doctors will be sponsoring a National Free Screening Day on April 11 from 10
A.M. to 4 P.M. The Yul Brenner Head and Neck Cancer Foundation is a major
sponsoring agency for the awareness week activities.
Program details vary by community, but some include
an outreach campaign, focus on research, free screening, a 5K run/walk on
Saturday, and closing ceremonies on Sunday the 13th.
Participating hospitals and screening sites can be found at
Outcome of Laryngectomy on Cases where Radiation Failed
One thought which some have who
have been diagnosed with larynx cancer and are told that radiation or
chemo/radiation is a treatment
option is to develop a fear that a failure of the non-surgical treatment carries
a higher risk of death. Put another way, if some patients are told that
radiation has an 80% chance of success for their stage cancer they may interpret
that as meaning they stand a 20% chance of not surviving at all. Assuming good
follow up medical screening to detect recurrences, this fear is unfounded,
according to a number of recent medical studies.
of one study conducted at the University of Pennsylvania on individuals for whom
radiation failed who had to have what is termed "salvage" laryngectomy surgery
was reported in the January issue of the Archives of Otolaryngology Head and
Neck Surgery. The study on 517 patients measured the long term effects of
those who underwent salvage laryngectomy following the failure of three
different treatment patterns involving radiation alone, or with various
schedules of chemotherapy (before radiation, or at the same time). From 52 to
59% of patients undergoing the treatments reported major and minor side effects
regardless of the type of treatment.
The results were that the survival of patients undergoing salvage
laryngectomy was not significantly lower. Said a different way, electing a non
surgical treatment did not increase the death rate of those making that choice,
although continuing side effects from the non-surgical treatment were possible.
This conclusion is in line with several other similar studies. The primary and
most significant negative impact of trying the initial radiation or
chemo/radiation treatment in this study was that more patients developed fistulas
(slow to heal wounds).
As is the case with any individual medical study, they are individual
pieces of the knowledge puzzle and, at best, represent the best information
available at a given point in time. Conclusions are always tentative and
subject to change in the face of new information and research. Before changing
treatment protocols, the medical profession requires follow-up and "replication"
studies (additional researchers following the same procedures and obtaining the
Positive Attitude and Surviving Cancer
Who is more likely to survive a
head and neck cancer--a pessimistic or optimistic patient? According to a study
reported in the February issue of the Journal of Clinical Oncology, the
optimist is more likely to be alive a year after diagnosis than the pessimist.
The research was a joint Canadian and French research project, and involved
patients diagnosed with several types of head and neck cancers. Pessimistic
patients and those living alone where more likely to fail to survive for a year
compared to optimistic patients independent of other factors such as
socioeconomic background or medical condition.
Text-to-Speech Computer Programs
Some laryngectomee patients who
are unable to use any kind of oral communication may benefit from the use of
computer programs which will take anything in written form and speak it out
loud. And some laryngectomees are able to utilize them in the immediate
post-operative period when they are unable to use an electronic artificial
larynx. There are a number of such programs on the market, and some computers
come with such a program pre-installed.
One free program is available for downloading at
And another free one is available at
Many States Spending All Future Tobacco
The story is familiar by now that
many states have spent their tobacco settlement money on about everything except
programs to keep the next generation of children from becoming addicted to
nicotine or to aid the victims of tobacco use. One of the more bizarre uses was
North Carolina which used most of its yearly tobacco payments to improve the
production and marketing of the state's leading crop -- tobacco. Humorist Dave
Barry compared it to ''using war-on-terrorism funds to buy flying lessons for
al-Qaeda.'' But some states are not just spending current income from the
settlement. They are spending all future income as well.
The primary reason is that laws in most states require that budgets be
balanced. And with income shortfalls, states are faced with either cutting back
government services or raising taxes. Since neither is politically popular,
many have looked upon current and even future tobacco settlement funds as "free
money" to use in balancing state budgets.
This past January Wisconsin traded 25 years of future tobacco settlement
income for $1.3 billion now, and spent it all on balancing a single year's
budget. Some have described the process as similar to lottery winners who have
the choice of a large amount of money spread over many years, or a significantly
smaller amount up front. For Wisconsin, the decision is particularly
troublesome since 40% of high school seniors smoke.
According to an article in USA Today, the Washington State Attorney
General, whose state tapped part of its tobacco money last year to balance the
budget, says it's a disastrous policy. ''Never in my wildest nightmares did I
think we would give up this settlement for cents on the dollar.'' The state
Attorney General was a lead negotiator with the 46 states in the tobacco
litigation talks and objected to her own state's plan to spend future settlement
money now. As more states follow the same pattern, she stated, ''The money in
the tobacco settlement is as addictive to states as the nicotine in cigarettes
is to smokers."
And Wisconsin is not alone. California, traditionally a national leader in
the fight against smoking, is selling a decade's worth of settlement payments to
raise $4.5 billion. In New Jersey, where the former governor promised in 1998
that ''every penny'' from the settlement should be put in trust for public
health, used it instead to raise $1.1 billion last year to balance the state
budget, and could tap up to $2 billion more this year. Over the objection of
the state's Attorney General, Washington sold more than a quarter of its tobacco
settlement last year to raise $450 million.
And other states are considering doing the same, including Colorado,
Missouri, and New York.
Concerning the squandering of tobacco money now to balance state budgets,
the Washington State Attorney General concluded, ''It's selling our children's
Florida Larys Get New Communication Device
by Judith Ramboldt, President, Florida Laryngectomee Association
This unit has been long in coming. For years, many people in Florida
worked to get some sort of way via telephone for the laryngectomee to
communicate. Other than an TTD, many larys could not use the phone because of
soft esophageal or TEP speech.
Working with the State of Florida through the Florida Telecommunications
Relay Incorporated (FTRI), the FLA has been trying for over a decade to have
speech aids added to the list of state provided communication equipment.
Beginning in late 2000, Griffin Laboratories (manufacturer of the TruTone speech
aid) began coordinating with the FLA and FTRI to find a solution that would
meet both State law and practical use requirements.
TeliTalk electrolarynx began shipping to Florida residents, free of charge,
courtesy of the state of Florida, at the beginning of March this year. A
telephone based speech aid, the TeliTalk is based on the TruTone. Aside from a
power cord coming out the bottom, it is operated just like any other speech aid,
allowing for a variety of neck placements and oral straw use. This unit will
not work unless it is connected to the telephone.
To apply for a new TeliTalk electrolarynx, which is only available to a
Florida resident, a person will need to fill out an application form (make sure
to ask for the "TeliTalk Special Equipment Application"). There has to be proof
the person applying for the unit is a resident of Florida and be certified as a
laryngectomee by a speech pathologist or other State authorized individual.
This has been a long time coming. But finally, the laryngectomees of
Florida are being recognized as people who need aid on the phone. James
Forstall, Executive Director, Florida Telecommunications Relay, Inc. and Matt
Griffin of Griffin Laboratories need to be commended for their unflagging
diligence to bring this dream to reality.
Welcome New Members
We welcome the 21 new members who joined us during
Los Angeles, CA
Dennis Barrett, ATOS Medical
Running Springs, CA
Milton, Somerset, UK
Bristall, W. Yorkshire, UK
Scott Brooks, RN, BSN
Tyne & Wear, UK
Nicole Costa - Caregiver
Terrie Linn Hall
Cold Spring, KY
As a charitable organization, as described in IRS § 501(c)(3), the
WebWhispers Nu-Voice Club
is eligible to receive tax-deductible contributions
in accordance with IRS