Title/Author Topic Article Type
Tricia Perkins Lary Minister In Wilderness Life As A Lary
Viet Nam Vet Larys 100% Disability News & Events
GERD Surgical Technique New Noninvasive Medical
Flap Surgery Different Types  Medical
Handsfree Valve Inhealth-Improvements Equipment
Irish Pubs Smokless Tobacco
Head Neck Cancers Surviving Stage 3 & 4 Medical
Lary Laughs Photo Humor
Welcome New Members News & Events

 

 


Internet Laryngectomee Support
February 2003


Lary Minister in the Wilderness - Tricia Perkins

     Tricia and Ron Perkins built the big log cabin they live in by themselves in 1995, and from their own logs and sawmill.  They don't have indoor plumbing or running water, and use a generator to create the electric power for their wireless cable, Internet, and electric lights.  When they need to go to town during the winter for groceries and supplies, to get the mail or see a doctor, they drive their snowmobile or four or six wheel drive ATV (All-Terrain Vehicle) 70 miles.  And then they drive a truck for another two hours to Fairbanks, Alaska. 

     In summer they must first get to an airstrip to be picked up by a small charter airplane and fly because of lack of roads and impassably muddy terrain even for snowmobiles or ATVs.  A big travel challenge is "break up" in spring when the snow is melting so they cannot use a snowmobile, and the mud has not yet dried enough for wheeled vehicles.  Even the charter planes can be grounded because they need to wait to make the transition between snow skis and wheels.  With such isolation, it comes as no surprise that Tricia and Ron home school their daughters, Shania, 7, and Macala, 8.

     They earn a living by trapping wolves, lynx, wolverines and coyote.  The fur is sold and Tricia makes some into hats and other fur garments.  Ron also periodically works at a nearly gold mine.

     It is Tricia who is the laryngectomee, and she is no stranger to cancer and other serious medical problems.  She survived three previous cancers only to develop, 19 years later, "Graves' Disease."  Graves' Disease is too much thyroid production and causes damage to both the thyroid gland and eye muscles.  Tricia had both symptoms.  Her thyroid gland was subsequently destroyed by treatments of radioactive iodine and she is on a thyroid replacement therapy.  She was also diagnosed around the same time with hepatitis C, and had to be treated with interferon (a genetically engineered version of a natural protein produced by the body).  So in addition to cancer checkups, she must have her thyroid and liver function tested.

     After suffering chronic sore throat and ear pain Tricia had her laryngectomy in October, 2001, in a twelve hour operation at Stanford University Medical Center in California.  But even in the recovery room with a head she said felt like a watermelon she found herself ministering to others as she linked hands with a man who was facing heart surgery and his wife and her family members as a lip reader spoke her prayer out loud. 

     She is the minister of the Freedom in Christ of Gold King Creek Church, and belongs to the Freedom in Christ ministries network.  Tricia suffered from a prolonged period of depression following her laryngectomy and, with all of the surgery and radiation, she is not presently able to speak.  Because of her speaking problems she says "My church is now the keyboard on my computer or on the street with a paper and pen.  I whisper loudly and most people can understand me, but it does wear me out.  But I do the best I can."   

     Tricia says that she learned most of what she has learned about being a laryngectomee from WebWhispers.  She continues to work with Dr. Mark Singer and SLP Meaghan Kane at the University of California San Francisco Medical Center and plans on trying Botox injections in hopes of getting TEP voice.   

     Tricia and family can be reached at goldkingkids3@yahoo.com

Viet Nam Vet Larys Eligible for 100% Disability

     The Veterans Administration now assumes that everyone who served in Viet Nam was exposed to the herbicide Agent Orange.  Those who subsequently had laryngectomies are assumed to have gotten their larynx cancer due to that exposure.  Laryngectomees who are Viet Nam veterans should see their local VA office.  Exposure to Agent Orange has also been linked to the development of diabetes (see http://www.webwhispers.org/news/mar2001.htm).

New Noninvasive GERD Surgical Technique

    GERD stands for Gastro-Esophaphageal Reflux Disease, and laryngectomees are more prone to it than the general population.  The contents of the stomach, including stomach acid, can back up into the esophagus.  In addition to being uncomfortable, it is associated with the development of esophageal cancer.  The reason stomach contents can back up is that the lower sphincter muscle in the esophagus just above the stomach, which is supposed to keep acid from backing up, has weakened over time.  The sphincter, which acts like a valve, simply relaxes and no longer keeps the contents of the stomach contained.  An additional factor for many laryngectomees is that our upper sphincter at the top of the esophagus has been weakened or eliminated, depending on the type of surgery we had.

     There are three approaches to dealing with GERD.  One of the most important is prevention.  Ideas for preventing acid reflux include (1) seeing your MD if you have acid reflux more than twice a week (2) eat 5 or 6 smaller meals per day rather than larger ones (3) avoid eating or drinking before napping or sleeping (4) after a meal avoid bending over, exercising, or lying down (5) avoid or reduce consuming coffee, tea, chocolate, citrus fruit, onions, garlic, fatty, or very spicy foods (6) reduce excessive weight and do not smoke (7) consider raising your sleep angle by propping up the head of your bed a few inches or sleeping with the upper part of the body elevated by pillows (ideas are from the American College of Gastroenterology). 

     For those who suffer from chronic GERD, your medical doctor may prescribe a medication such as Prilosec or Prevacid which works by blocking the formation of stomach acids.  Other medications may be prescribed to protect the lining of the esophagus or to speed up the time it takes the stomach to empty.

 
     A final alternative is surgery, and a new noninvasive approach has been developed which permits a surgical procedure to be done on an outpatient basis.  The Food and Drug Administration has recently approved a technique called the "Bard EndoCinch procedure."  It requires no incision and is performed using a flexible endoscope inserted down the patient's throat.  It takes less than 45 minutes, is reversible, and is done on an outpatient basis with no general anesthesia required.

    Using an endoscope inserted in the mouth a suturing system is lowered to the bottom of the esophagus where it meets the stomach.  Suction is applied to the wall of the esophagus and a fold of tissue is gathered together in what is termed a "pleat."  The endoscope makes two sutures (stitches) and pulls them together to make the pleat stable.  Depending on the needs of the patient, more than one pleat may be created.  The effect of the procedure is to bring the sides of the esophagus into close proximity to each other to function as a new sphincter muscle.

     The patient can resume normal activities following the procedure, and the only restriction is the need to eat softer foods for a two week period.

UK Study Shows No Difference for Types of Flap Surgery

     A study reported in the British Journal of Oral and Maxilocacial Surgery this past fall compared the outcomes of surgery involving the creation of an artificial esophagus using one of three surgical procedures: radial forearm (tissue is taken from the forearm), gastric pull-up (the esophagus and stomach are pulled up and attached where the cancerous esophagus was removed), and jejunal tissue transfer (a piece of the small intestine is used to create an artificial esophagus).  The research found no significant clinical differences between the three types.  More long term problems were experienced with swallowing than with speech, but the three approaches showed no differences in significant differences in speech, management of saliva, or swallowing.  There were, however, more complications following gastric pull-up surgery than the other types.

Inhealth improves Handsfree Valve

     Inhealth recently announced the availability of their new ATSV II (Adjustable Tracheostoma Valve).  It takes the place of their ATSV and Inhealth says that the new model is smoother and easier to rotate and adjust, that speech is easier, and that the new product is lighter weight than the standard previous model.  The ATSV II can be adjusted by the user, and it can be done while in place to alter the amount of air pressure it takes to close the valve which permits handsfree speech.  

     In the winter edition of the Speakers Club News, Inhealth estimates the yearly cost of using the ATSV II at $1466, which assumes the yearly replacement of both the ATSV and filter cap, and the use each day of one TruSeal glued-on housing and filter.  These costs compare favorably with competing products.

Irish Pubs to Go Smokeless

     Saying that "this ban will mean a massive cultural change for people in this country," the Irish Health Minister announced the elimination of smoking in all pubs and clubs in Ireland.  The change is seen as so significant that the government has given the public 11 months notice before enforcing the ban.  As has been the case in other bans around the world the decision was motivated by studies which show a link between secondhand smoke and cancer and heart disease.  The Minister said "I'm doing this because, as this report makes inescapably clear, I have no choice."

     70% of Ireland's nearly 4 million population do not smoke, but creating no smoking sections in typical Irish pubs for those who do was simply impossible.  The legal age to buy cigarettes in Ireland has also gone from 16 to 18, tobacco ads have been banned in newspapers and magazines, and tobacco companies are barred from sponsoring events.  Pub owners had resisted the ban while unions representing pub employees had supported it.

Surviving Stage 3 and 4 Head Neck Cancers

     According to an article appearing in the January, 2003 issue of the Archives of Otolaryngology Head and Neck Surgery, identifying the most effective treatments for head and neck cancers continues to remain unclear despite a number of research studies over the years which have sought to identify one treatment as better than another.  The problem in arriving at a clear conclusion is often in the selection of patients for the research, and separating the consequences of the treatment from other factors. 

     The study reported in the Archives and carried out at the University of Cincinnati Medical Center in Ohio sought to get around the patient selection problem by following the survival of all of their stage 3 and 4 head and neck cancer patients.  The patients underwent a variety of treatments in the eight year period covered by the research (1992 to 2000.)  The percentage of patients who survived for one, three, and five year periods was compared.  It should be noted that the figures contained in the graphic include all head and neck cancers, and not just larynx cancer.  Larynx cancer has a higher survival rate than a number of other cancers of the head and neck region.  The study also surveyed only stage 3 and 4 cancers.  The survival rates are better for lower stage cancers.
    
     In some cases, patients were treated with radiation because their cancers were inoperable ("unresectable"), or because their overall health made surviving surgery questionable.  These subgroups are identified in the graph as "unhealthy" and "unresectable" under the radiation category.  Those patients who had the option of elective radiation did better in terms of surviving compared to surgery, but the differences are not considered to be statistically significant (the differences are small and could be due to chance).   

     According to the study, a significant number of deaths came not from a return of the cancer or development of a new one, but another illness the patient had at the same time as the cancer (called a "comorbidity").  An example would be someone who had a heart condition or diabetes at the same time they developed the cancer.  Another complicating factor in assessing various cancer treatments is patient "compliance."  For example, some patients may continue to smoke or engage in other behaviors which put them at risk for a recurrence, developing a new cancer, or premature death from other causes.
 


     The factors which were most associated with surviving noted in the survey included the age of the patient and whether the cancer had spread to the lymph nodes.  Older patients and those whose cancers had spread were less likely to survive.

     However, one of the continuing issues in trying to compare the outcomes of various treatments is the use of the single measuring device of survival.  The sole measurement used is which patients are still alive at specified time periods; in this case, two, three and five years. 

     However, the impact of various treatments on patients is much more complex than mere survival and touches on a number of consequences commonly referred to as "quality of life" issues.  For example, surgical removal of a larynx is treated in this kind of research as equal to radiation, and the only measurement is long term survival.  But with radiation treatment the larynx is often preserved and the individual continues to speak and breathe as before, and retains the ability to smell and taste.  Furthermore, such an individual may have no significant side-effects, may recuperate very quickly, and be able to resume all aspects of their pre-cancer lives including their occupations.  Comparing that result with what is more typical for someone undergoing radical laryngectomy and all of the physical and psychological consequences trivializes the differences when only survival is measured.  Comparing just survival basically says there is no difference between a patient who becomes a laryngectomee and survives, versus someone who is successfully treated with radiation and survives, but with everything preserved as before the cancer.

     This point is made even more clear in an article titled "Organ Preservation Strategies in the Treatment of Larynx Cancer" which appeared in the February 2003  issue of Current Treatment Options in Oncology, when its author, Dr. L Coltrera, stated,

"For most patients, a total laryngectomy should not be used as the initial treatment for any stage laryngeal tumor. The goal in treating a patient with laryngeal cancer must be not only to cure but also to provide the best functional outcome for the patient.  In the United States, the treatment of laryngeal cancer has moved from radical surgery toward a more conservative approach involving...(radiation) and chemotherapy, with... surgery held in reserve for salvage.  In Europe, there has been increasing reliance on limited endoscopic...procedures for early tumors and the use of function-preserving surgical approaches for more advanced (cancers).  Careful monitoring of the conservatively treated patient is mandatory to allow for early salvage of failures to the original (non-surgical) therapy.     Because of the high costs of hospitalization, the direct medical costs attributable to conservative approaches are equal to or less than the costs for more radical (surgeries).  Even if survivals are only equivalent, organ preservation approaches should be the treatment of choice for most patients."

Lary Laughs

Welcome New Members 

     We welcome the 17 new members who joined us during January 2003:

 

Bethany Anke - SLP
Pittsburgh,PA
ankeb@msx.upmc.edu
Sandy Baiamonte
Warrior Run, PA
marvynsb@att.net
Kimberley Bociek
Granite Bay, CA
Pyrishpix@aol.com
Mary Brawley - SLP
Milwaukee, WI
MBrawley@mcw.edu
Carol Helm
Reno, NV
olan89502@worldnet.att.net
Robert Herring
Houston, TX
rob_herring@fleming-law.com
Kathryn Hoff
New Port Richey, FL
kathoff_2000@yahoo.com
Robert Kanjian
Clearwater, FL
Rkanjian@webtv.net
Thomas Merritt
Front Royal, VA
quiettom@shentel.net
Jan Parks
Bloomington, MN
janparks@mailstation.com
 Michele Poynton-Marsh - SLP  
Milton, DE
michelemarsh@mchsi.com
Nat Quick
Petaluma, CA
n.quick@comcast.net
Jeffrey & Emma Rodd
S.Wirral, Cheshire, UK
emmarodd@aol.com
Joni Russ - SLP
Anniston, AL
jruss@hvps.com
Nina Taylor
Tulsa, OK
ninaltaylor@peoplepc.com
Bert Dewayne Weeks
Saulsbury, TN
kbweeks@bellsouth.net
Dale & Sharon Zahrndt
Powder Springs, GA
sharonz4@netzero.net
 

 


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 § 170.


Return to Home Page Return to Journal Page