JULY 2007

The following information is from our July 2007 meeting,

Speaker:        Tani Bahti, RN, CT, CHPN
                        P.O. Box 89055
                        Tucson, AZ  85752
                        Tani@pathwayseol.com
                        www.pathwayseol.com

Topic:             Hospice Care

Important Questions for Yourself and Your Family When Making Treatment Decisions

• Do I have the information I need to make this decision?
• Is fear or lack of information pushing me towards a particular decision?
• What am I most afraid of?
• What are my goals at this time in my life and will this treatment help me reach them?
• Am I making a treatment decision based on what I believe someone else wants me to do and not what I really want to do?  Have I sat down with that person to clarify what each of us want?
• Who or what is my source of strength and support and have I utilized that?
• If I have a limited life expectancy, how do I want to spend the time I have?
• What does fighting the good fight mean to me?  Seeking aggressive treatment until the end or allowing a natural death?
• Have I completed my advanced directive (Living Will and Medical Power of Attorney), which declares my wishes for the extent of medical treatment I wish to receive in the event I cannot speak for myself?
• Have I talked with my family and physician about my advance directives?
• Have I asked all my questions, expressed all my fears, and shared what I truly feel with my family and physician?

The Important Questions for Making Treatment Decisions

• Is the goal of the treatment to cure, prolong life or relieve symptoms?
• What is the best I can hope for with this treatment?
• Is this a standard treatment or experimental?  What are the chances for success in my particular case?
• How and when will I know it's working?
• How will this impact my daily living and/or goals?  What are the physical changes I may experience and how will you help me manage them?
• If I have side effects, how long might they last?  Is there anything I can do to prevent or minimize them?
• Are there any potentially permanent side effects?
• Will I need extra help to manage at home and if so, for how long?
• If I refuse this treatment, what can I expect to happen?
• If I refuse this treatment, will you still be my doctor?
• Is there someone I can talk to who has received this treatment?
• Do you have any material about this treatment that I can take home and review?
• Are there other ways to manage my disease and would you recommend them? Why or why not?

Although medicine doesn't have a crystal ball to know how you are going to respond to a particular treatment, it is important that you have enough information so you can make a decision.  Consider your lifestyle, your beliefs, your goals and values.  Consider your family, finances and spiritual beliefs.  You always have the right to know and to chose.

BILL OR RIGHTS

FOR PATIENTS

I have the right to be told the truth about my disease.

I have the right to feel bad if I receive bad news.

I have the right to talk to my doctor and family about my disease.  I also have the right to privacy in refusing to talk with others about it, if that is my choice.

I have the right to be treated as a person and not merely a “patient”.  The fact that I am sick does not give others the right to make decisions for me, unless I ask them to.

I have the right to think about other things besides my disease.  I do not have to allow the disease to control every detail of my life.

I have the right to ask others for help in the things I cannot do for myself, within reason.

I always have the right to hope – for a full cure, a longer life, or a happier life here and now.

I have the right and it is ok to be angry with people I love.  My anger does not mean I have stopped loving them.

I have the right to cope with my disease in my own way, and my family has the right to cope with it in theirs.  Our ways may be different, and that is ok.

I have the right to be free of pain, if that is my choice.

FOR FAMILY MEMBERS

I have the right to enjoy my own good health without feeling guilty.  It is not my fault that someone I love is ill.

I have the right to chose whom I will talk to about the disease.  I may choose to not talk to anyone at times.

I have the right to know what is going on in our family, even if I am a child.  I have the right to be told the truth about the disease in words that I can understand.

I have the right to disagree with the patient even if he or she is sick.  I can feel angry and not always feel guilty, because sickness does not stop someone from being a real person.

I have the right to feel what I feel now; not what someone else says I “should” feel.

I have the right to look after my own needs, even if they do not seem as great as the needs of the patient.  I am permitted to take “time out” from the disease without feeling disloyal.

I have the right to get outside help for the patient if I cannot manage all the responsibilities of home care myself.

I have the right to get help for myself, even if others in my family choose not to get help.

June, 2006

This information is from the June 2006 meeting.

Nutrition & Cancer
Mary Marian, MS, RD
Sunstone Nutritionist
Email: mmarian@u.arizona.edu

Overall goal to decreasing risk for disease:

• Be physically active on most days – 30 minutes
• Maintain a healthy weight
• Eat a healthy diet
• All 3 independently promote a healthy environment within the body

• Carbohydrates

• Protein

• Fat

• Eat clean food – wash good
• Make diet colorful – promote variety
• Be mindful when eating – taste food/stop eating when full
• Examine relationship with food – why/where/when/what do you eat?
• Plan – ensuing that meals provide a variety of foods increase the likelihood of it being healthy – include a fruit, vegetable starch, protein, fat, and dairy/or dairy alternative
• Consume healthy beverages – tea, water, small quantities of juice, milk/milk substitute

MOST OF ALL – ENJOY EATING!!!

August, 2005

The following information is from the August meeting:

Kindle Rising, M.S., CCC-SLP
Speech-Language Pathologist
HealthSouth, Rehabilitation Institute of Tucson
520/325-1300 x4061
E-Mail: Kindle.Rising@HealthSouth.com

What is Dysphagia?

 Dysphagia is the medical term for any difficulty or discomfort when swallowing. Dysphagia can occur at any stage of the swallowing process.

Symptoms of Dysphagia

Coughing or choking while eating or drinking.

Feeling as if food is “caught” in your throat.

“Wet” sounding voice.

Pain or severe dryness when swallowing.

Difficulty chewing.

Difficulty clearing oral cavity of food.

Aspiration Pneumonia.

Changes in Swallowing After Head or Neck Surgery

Oral Cavity: May cause reduced ability to chew, control food in the mouth, and/or initiate a swallow.

Pharynx: May affect pharyngeal peristalsis, or the ability of the muscles of the throat to move food to the esophagus.

Larynx: May effect laryngeal elevation, which helps open the muscle to the esophagus. May also affect laryngeal closure, which protects the airway.

Changes in Swallowing After Radiation Treatment

Xerostomia (dry mouth)

Decreased taste

Dental problems associated with chronic xerostomia

Fibrosis (stiffening) of tissues surrounding treatment site may cause decreased range of motion in the tongue, jaw, larynx or pharynx

Dysphagia Management

Pre-Treatment Counseling

Helps to increase an individual's awareness of potential swallowing difficulties based on his or her specific treatment plan.

Assessment

May occur one or more times during and/or after treatment.

Identifies the nature and extent of swallowing difficulties so that a plan for treating dysphagia may be developed.

Treatment Options

Oral Care

Prosthetic Devices

Diet Changes:
Soft Diets
Thickened Liquids

Range of Motion Exercises

Swallowing Strategies:
Postural Changes, such as chin tuck
Supraglottic Swallowing
Mendelsohn Maneuver

Vital Stim Therapy

Neuromuscular Electrical Stimulation

Improves muscle strength and motor control

Designed to stimulate muscles through intact motor nerves

FDA approved for about 3 years for treatment of dysphagia

NOT designed to improve sensation: however, some patients do report sensory changes

If You Are Experiencing Dysphagia...

Talk to your doctor.

Obtain a referral for a swallowing evaluation by a speech-language pathologist.

Discuss treatment recommendations with your therapist.

Ask questions!!

APRIL 2005

PERIPHERAL NEUROPATHY

Numbness and tingling of your extremities (hands and feet) is called peripheral neuropathy and is caused by damage to the nerves between the extremities and the central nervous system (CNS). Some chemotherapy drugs can cause peripheral neuropathy.

What is peripheral neuropathy?

Peripheral neuropathy is damage to the nerves that transmit signals between the extremities and the central nervous system. These nerves include those that transmit sensation from the extremities to the CNS or those that carry signals for muscle movement from the CNS to the extremities. Depending on the type of nerve damage, the patient may fully recover without residual effects or may partially recover but have long term deficits in their ability to feel or move. If severely affected, the patient may develop chronic muscular weakness and atrophy.

What causes peripheral neuropathy?

There are many possible causes of numbness and tingling. Some of the more common of these include:

Diabetes
AIDS
Uremia (too much urea in the blood due to kidney problems)
Severe malnutrition
Trauma, such as broken or dislocated bones
Cancer
Certain medicine or toxic substances

What are the symptoms of peripheral neuropathy?

In addition to numbness and tingling, other symptoms of peripheral neuropathy include weakness, pain in the arms, hands, legs and/or feet, and abnormal sensations such as burning, tickling, pricking or tingling also known as paresthesia.

The areas of the body most commonly affected by peripheral neuropathy are the fingers and toes. Symptoms usually start at the end of the extremity and gradually move upward. Bowel function may also be compromised, causing or worsening constipation and eventually causing blockage of the intestines.

What can be done about peripheral neuropathy?

Recovery from peripheral neuropathy is usually slow, but steps can be taken to encourage regeneration of the damaged nerves. Some approaches include acupuncture, massage, physical therapy and transcutaneous nerve stimulation.

ACUPUNCTURE: A technique originating thousands of years ago in the Chinese culture, acupuncture uses thin needles inserted into the body at certain points. Each point controls the energy, called 'Chi' in Chinese medicine, in different parts of the body. These points also appear to control sensation, such as pain and numbness. Acupuncture has been shown to relieve pain associated with peripheral neuropathy.

MASSAGE: By increasing blood flow, massage may provide pain relief associated with peripheral neuropathy.

PHYSICAL THERAPY: Through range of motion and stretching exercises, physical therapy may strengthen muscles that are weak and improve other symptoms of peripheral neuropathy.

TRANSCUTANEOUS NERVE STIMULATION (TNS): Through the use of a special device that transmits electrical impulses through electrodes attached to your skin, TENS has been shown to provide pain relief and may promote nerve regeneration.

February 2005

VitalStim Therapy is a therapeutic intervention for the management of dysphagia (any difficulty in swallowing). VitalStim Therapy uses small electrical currents to stimulate the muscles responsible for swallowing. At the same time, trained specialists help patients “re-educate their muscles through rehabilitation therapy. For more information, please look at the website: www.vitalstimtherapy.com

Panzem is a drug that is in clinical stage study right now that has been found to work in combination with traditional chemotherapy drugs in the treatment of recurrent or advanced head and neck cancer. For more information, please look at the pharmaceutical company website, www.entremed.com.

November 2004

The following information is from the November meeting:

Transoral Laser Microsurgery for Head and Neck Cancer
A New Surgical Approach to the Primary Tumor
by Michael L. Hinni, M.D.

ABSTRACT

In the United States , small cancers of the larynx, hypopharynx, oral pharynx and oral cavity are commonly treated by open end-block resection and/or radiotherapy with predictable risks and morbidity. In Germany (primarily) an extensive alternate experience (transoral laser microsurgery TLM) has been developed in which both small, medium and large sized cancers are treated with multi-block endoscopic laser resection. Using specialized instruments, new concepts of exposure, wound management and case strategy, improvements are claimed in both cost and quality of life while cure is maintained or improved. Transoral laser microsurgery is available in the United States in very few select centers. This poster presents the Mayo Clinic Scottsdale experience with transoral laser microsurgery and attempts to clarify the concepts and potential applications for head and neck surgeons who find themselves interested in its relevance to their practice.

What is transoral laser microsurgical resection?

This is a surgical treatment for the primary tumor only. Head and neck cancers generally originate from an epithelial primary site, and the vast majority are squamous cell carcinomas. In contrast to traditional open (head and neck cancer operations where the jaw, pharynx or larynx are split or opened from the outside for exposure) TLM permits a transoral exposure using specialized laser endoscopes. These new endoscopes have been modified for optimal exposure for specific sites. As larger cancers cannot be removed in a classic “en bloc” fashion, the tumors are transorally divided and removed piecemeal. Precise histologic margins are cleared by frozen section as the surgeon works moving from one area to another, much as a Moh’s dermatologic surgeon removes a skin cancer. Classically, surgeons are taught that cutting across tumor may increase recurrence rates by “seeding” tumor cells into the wound. TLM abandons and challenges this premise. The data presented here confirms what has been noted in European centers that tumor division does not increase local recurrence rates. Healing is by secondary intention and; in most cases, eliminates the need for a reconstruction of the defect. All operations are done under a high-power operating microscope with attached CO 2 laser. This is not a vaporization strategy, but produces tangible specimens and margins. The specimen is the same volume as would be obtained with an open operation. In addition to the laser, a number of new specially designed instruments are employed including: endoscopic tissue graspers, laser plum evacuators, blunt and sharp dissectors, insulated cautery, endoscopic bipolar cautery and specialized vascular clips for larger caliber vessels when encountered.

Open surgery is still necessary to address the regional lymph nodes in the neck. This is simply a different way of resecting the primary tumor. Indications for radiotherapy are not changed.

Disadvantages of TLM

There are a number of disadvantages to TLM including the start-up cost to the surgeon and institution for training and equipment. A basic set of laser endoscopes costs roughly $68,000. If one adds to that, the cost of the laser, the cost of an operating microscope, the cost of smoke evacuators, and a host of other essential endoscopic equipment, start-up costs can be daunting. Due to exposure, there are limitations on the kind of reconstruction that can be performed, although avoiding a reconstruction is usually an advantage. There are obvious limitations on teaching residents and fellows, as TLM is largely a one-person job. If a surgeon does not clear a region of the cancer before moving on, it is possible that microscopic tumor could remain. For this reason, it is probably best if one person do the procedure from start to finish. The anatomy in the pharynx and larynx is complex, adding further difficulty to assigning part of a resection to a resident. The treating physician must relearn anatomy from the “inside out.” Certainly, the time spent with pathologist is increased and the demands are heavy for complex support from the frozen section cytotechnicians as well as the pathologists. Further, there is the potential that TLM can attract patients with raised expectations, systemic comorbidities and those patients that have failed other treatments.

TLM does not replace traditional surgery. Many advanced cancers where complete removal of mandible, larynx or pharynx is required must be treated by open surgery.

Advantages of TLM

The primary advantage is the reduced treatment morbidity. Tracheostomy can generally be avoided in these patients where in an open traditional operation tracheotomy is an expected component of the resection. Swallowing can resume earlier following TLM as one does not need to wait the typical 10-day period for suture lines from the approach to the tumor to mend. Occasionally, with traditional open operations (especially in patients having received prior radiotherapy) suture lines can break down leading to a pharyngocutaneousfistula. Thus far, there have been no fistulas in this series. As the CO 2 laser produces very little adjacent thermal tissue injury, patients can have extensive resections with almost no swelling. This tends to reduce disfigurement (especially if there is no mandibular osteotomy) and pain. As the defect is left to heal by secondary intention, many fewer flaps and reconstructive procedures are performed. Thus, patients are spared the morbidity of the donor site for the reconstruction. Additionally, the healed wound will have sensation, which is very difficult to reproduce with a reconstructive procedure. An additional theoretical benefit comes should postoperative radiation be used (as is generally the case for Stage III and IV disease). As the patient’s neck and pharynx are not disassembled by the surgeon to approach the tumor, the vascularity (and thus the oxygenation is improved) in the wound bed is disturbed less, and this may improve the effectiveness of radiation. Perhaps the major advantage is the length of stay. While standard surgery for patients with advanced-stage disease will routinely lead to a 7 to 10 day stay in the hospital, the average stay in our series is 3.3 days. In addition to improving quality of care, this reduces costs to the institution for the same DRG.

There are things that do not change

Certainly, time spent in the operating room does not change. The time spent doing a reconstruction is, of course, eliminated; however, there is additional time in operating room set up and tumor exposure. There are anesthetic concerns, for example, one risk of TLM is a tracheostomy tube fire and thus certain combustible gasses (nitrous oxide) must be avoided and the O 2 mixture should be kept at a minimum (lower than 30%). While our disease-free survival rate at three years is extremely good, it is too early to say the cure rates are improved by this technique as some Europeans centers have claimed. With only 10 local recurrences in 183 cases (average follow-up 22 months), TLM compares quite favorably to traditional surgical approaches. Indications for adjunctive treatments such as neck dissection and postoperative radiotherapy are not changed over traditional operations.

Complications

Bleeding, even fatal bleeding, has been reported in the European literature. Thus far, in this service, there has been no bleeding, no return to the operation room for any reason, no perioperative deaths, and no airway complications in spite of the avoidance of tracheostomy.

Conclusion

Transoral laser microsurgery is a new technique available to patients with head and neck cancers that reduces morbidity and hospital stay significantly over standard open resections. Using specialized instruments and new techniques for tumor exposure, a more logical customized resection of the primary cancer is possible without compromising local control and generally without the need for a tracheostomy. All other treatment options remain available to the oncologic team, and there is a theoretical advantage in the use of postoperative radiotherapy due to the preservation of the perilesional microcirculation.

October 2004

The following is information from our October Meeting:

Speaker: Elad Schiff, MD
Fellow, Program in Integrative Medicine
College of Medicine
University of Arizona

“Imagine a world in which medicine was oriented toward healing rather than disease, where doctors believed in the natural healing capacity of human beings and emphasized prevention above treatment. In such a world doctors and patients would be partners working toward the same ends.”
- Andrew Weil, MD

Facts:
24% of American adults use some form of alternative medicine.
60-80% of cancer patients use some form of alternative medicine.
Most alternative medicine costs are paid for by the patient.
40% of patients who use alternative medicine don't reveal this fact to their conventional MD.

Integrated medicine is oriented towards healing, taking the whole person – mind, body and spirit – into account. It blends all therapies employed in both alternative and conventional medicine.

The natural force within is the greatest healer. The individual's healing force, his values and the dynamics of his support system must be considered when the integrated doctor is tailoring a program for the patient.

Interview questions to ask the doctor when considering alternative medicine:

1. Safety: Is alternative medicine effective? Has research to support the treatment's effectiveness been published in peer-review medical journals?
2. Effectiveness: If the therapy is used instead of conventional treatment could the delay affect the chances of being effectively treated later?
3. Conflict: Will the use of alternative medicine in conjunction with conventional medicine have any adverse effect on either protocol?
4. Does the supplement or intervention help with side effects from the treatment?

Note that the term “natural” does not imply that the protocol is safe.

When selecting an alternative medicine physician:

1. The patient should ask his conventional doctor or RN for a referral to an alternative medicine doctor, as well as asking friends, family and others to recommend an alternative medicine doctor.
2. The patient should interview a select group of practitioners, asking for credentials, license, board certification, and experience in treating the patient's disease.
3. The patient should determine if his insurance company will cover any portion of the cost for alternative medicine. Is any portion tax deductible?
4. The patient should come to his first alternative medicine appointment with all documentation about his medical history, current condition, medications (including OTC drugs and vitamins), and any other relevant information. Make a list of questions to ask at your first visit. You may want to bring a friend or family member who can help you ask questions and note answers.
5. The patient needs to decide if the doctor is “right” for him. Did the doctor adequately respond to the patient's questions and concerns? Was the patient comfortable with the doctor?

Alternative medicine addresses the patient's health by balancing body, mind and spirit. It addresses nutrition, supplements, medication, exercise, massage therapy, etc. Hypnosis can also be part of the protocol. Defined as focused awareness or state of intense focus, the trance achieved during hypnosis allows the subconscious mind to be more receptive to messages. Other options in an integrative medicine program may include acupuncture, meditation, journaling, attitude adjustment, healing touch, spirituality and prayer. Studies have shown that acupuncture has been successfully used to treat dry mouth caused by radiation therapy.

For information on ordering audio programs for hypnosis, visit the website for Tranceformation Works, www.tranceformation.com or call their toll-free number 866-506-1700.

For information on the University of Arizona, Program in Integrative Medicine go to their website, www.integrativemedicine.arizona.edu or call 520/694-8888.

September 2004

The following is information taken from our September Meeting on Coping:

COPING TIPS

Remember that God is with you every step of the way. When you think that all is lost, remember that He will only hand you as much as you can handle. Although it may seem endless right now, there is a light at the end of the tunnel. Working it out together helps enormously as, together, we can cross almost any bridge. Most of all, never forget that God loves you. - John and Bonnie

The first few weeks of treatment is part of the healing process. It's the courageous person who gets through that process. It took all the courage, faith and love that I could muster to get through cancer treatment. - Rick

After my diagnosis in March, 2002, I now know that cancer is NOT a death sentence. I was given a “very poor prognosis” by one oncologist, a “poor prognosis with only a 30% survival rate” by the Merck manual and “less than 50% chance” by another oncologist. Despite these challenging odds, I made up my mind to be one of the 30% who survived. People play the lottery all the time and believe they can win. Even with 20 million to 1 odds, they still believe. At 2 to 1 or even 3 to 1, I had much better odds than that! I have met people who either didn't want to go through treatment or who complained about the side effects of treatment. I tell them that the alternative is worse. You will die without treatment, and pain will be much worse than any of the treatment side effects. But, the greatest way for me to cope was through my Christian faith. My friends would come over and pray with me. I would ask God to give me strength and let me be the light for others. God didn't give me cancer; this world gave me cancer. And when I cross over the River Jordan into the Promised Land, there will be no cancer. - Jim

From a supporter's perspective, this is my take on cancer -

• Cancer no longer means certain death. Do not listen to out-moded statistics.
• ALWAYS present a positive attitude.
• Never show distress or a weepy face.
• Be there for your partner. See him/her through the challenging treatments with an attitude that “all this is good for you.”
• Take a break from care-giving. If you have a loyal friend with a sympathetic ear and a closed mouth, use his/her shoulder to unload your woes. If not, God is always ready to help.
• Make time for yourself. Relax.
• If all else fails, call Ms. Linda Caravello of the Pima County Health System and Service. She is very active in caregiver education and support programs. Linda is a very nice lady who helped me by just listening and advising. - Lillian

Knowledge is power. From the moment you suspect you have cancer or are diagnosed positive with the disease, seek out information. Use every means to obtain it. Telephone the American Cancer Society. Search for articles in library files. Zero in on your type of cancer on the Internet. Contact a support group. Knowledge gives confidence and is the finest coping mechanism readily available to all. - Carol

During and after treatment, I always tried to keep our daily lives as normal as possible, When Mike felt up to it, we would have friends over or go out. I made sure we returned phone calls, recognized important events in other people's lives (birthdays, anniversaries, etc.) kept our house up, etc. Participating in these things helped us to feel that our life was “normal”, even during stressful times. Our support system really kept us going. We are very fortunate that our family, friends, neighbors and co-workers rallied around us. Not a day goes by that we don't get a call, card,a hug, or some other act of love and caring. We embrace all of this and hold it close to our hearts. Many of our supporters have truly gone above and beyond, and we will always remember how important these things were in keeping us motivated and positive. - Mike & Mindy