Melanoma FAQ

This FAQ was written as a public service, and is intended as an educational aid. Nothing herein should be construed as medical advice.

Introduction

Melanoma is a type of cancer, originating in the melanocytes, the cells containing color. Approximately 47,700 cases per year are currently diagnosed in the United States alone, and the incidence is increasing at the rate of 4.3% per year, one of the fastest increases in occurence rates of all cancers. In about 2% of occurences, the disease is present even though no skin discoloration occurs. This is called amelanotic melanoma.
The American Cancer Society estimates that there are currently 480,000 cases of melanoma in America today and that there are 7,700 deaths per year from the disease. In the U.S., Europe and Australia there are 90,000 new cases diagnosed per year and 15,000 deaths annually.

"According to the American Academy of Dermatology, one person dies from malignant melanoma every hour. The overall incidence rate for the disease is increasing faster than that of any other cancer and by the year 2000, an American's lifetime risk of developing melanoma will be one in 75. The disease is now the most commonly occurring cancer in women between the ages of 25 and 29 -- and is second only to breast cancer in women ages 30 to 34. " - Sept. 24, 1996 /PRNewswire; SOURCE: Schering-Plough Corporation.

When melanoma spreads, it often affects other places on the skin, lymph nodes, lungs, liver, brain or bones. Such secondary spread is referred to as Metastatic Melanoma..

Many cancer patients prefer not to dwell on the statistical survival rates, preferring to recognize that each person's case is quite different and unique; many factors can help a person survive, and positive thinking is considered to be one of those factors. There are many people who have been living productive lives for many years after being diagnosed with stage IV melanoma.



1) What is a Melanoma?

Melanoma is the malignant tumor deriving from melanocytes through malignant transformation. Melanocytes are derivative cells originating from the neuro-ectodermal crest (the tissue matrix for the brain and medullary spine), which do migrate during the early fetal period into the skin, where they settle within the epidermis and become part of the complex skin structure. These cells are by no means skin cells as they have a neuro-ectodermal origin, the potential of migrating, and the functional capacity of nerve cell units: One of the most prominent functional features of melanocytes is to produce the melanin pigment as a response to UV radiation in order to protect the skin structures from sunburn damage.


2) Where are melanocytes locacted in the skin?

The Melanocytes are scattered singularly through the basal parts of the epidermis. Sometimes, they form cell clusters at the rete edges, which are clinically visible and known as "melanocytic nevi". These nevi are regularly benign and should no be mixed up with melanomas. However, as they contain melanocytes, these melanocytes might become malignant as is the case with melanocytes outside of nevi.
a): The malignant tumor deriving from keratinocytes is termed "squamous cell carcinoma".

b) The malignant tumor deriving from basal keratinocytes is termed "basal cell carcinoma".

3) What are Stages?

Melanoma is most commonly classified in four Stages, determined by how deeply the cancer cells have penetrated the body. Stage I involves a mole or growth on the top layer of the skin. Stage II indicates that the growth is deeper but has not spread anywhere else in the body. Stage III is when the melanoma has spread to a nearby lymph basin (the most common) or other nearby tissues. Stage IV melanoma has spread to other more distant areas of the body. As you would logically assume, Stage I is less dangerous and easier to treat, and each higher stage is progressively more serious.

Other systems of staging are also used by some doctors. Ask your doctor about the definitions of staging he or she may use.

4) What are the recommended treatments for melanoma?

Surgery is the most common treatment for melanoma, especially for Stages I through III. About 95% of melanoma cases are treated first with surgery. Other treatments are also added as needed, and include chemotherapy, immunotherapy, radiation therapy, or a combination of the three. As an example of how they are sometimes used together, one of the MEL-L members received an intensive therapy involving 3 days of DTIC and cisplatin, followed by 8 days of Interleukin-2 and Interferon per month. This treatment regimen had severe (but temporary) side effects, including nausea, dry heaves, exhaustion, shortness of breath.

Chemotherapy can either be a systemic treatment, affecting cancer cells all over the body, or it can be applied using localized techniques called infusion and perfusion, where chemicals are placed into the limb or area where melanoma presented itself..

Immunotherapy (also known as biological therapy) is designed to help the immune system to fight off the cancer cells. Interferon and Interleukin are common forms of immunotherapy for melanoma. Interferon, a substance naturally produced in the body, works to boost the body's immune reaction to cancer cells, and also may inhibit the growth of these cells, or help them to act more normally in the body. Interleukin stimulates the growth of white blood cells, a major asset to the immune system.

Another form of immunotherapy is vaccine therapy, of which there are several kinds. All vaccine therapies are considered experimental and unproven by most cancer experts at the time of writing, yet are also very promising. Autologous vaccine is that in which the patient's own tumor cells are made into a vaccine that will cause the patient's body to make antibodies against melanoma. The vaccine used at the John Wayne Cancer Institute is created from three different lab-cultured cell lines (originally other patient's tumor specimens). Each of these cell lines were specifically selected because they exhibit many antigens (surface markers) which the immune system uses to identify unwanted cells. The widest variety of antigens helps teach the immune system to identify and destroy most of the various cell mutations.

Live vs. dead cell vaccines: JWCI's vaccine is a live cell vaccine in which the laboratory cells are irradiated so they cannot survive; the radiation does not inhibit their ability to stimulate the patient's immune response. Other vaccines use various cell sources and destroy them via a blender-like device. Sometimes these cell fragments are mixed with known immune response enhancers like BCG (bovine tuberculosis), interferon-alpha, or one of the many interleukin variations.
The following quote comes from an unattributed news article about melanoma vaccine from the internet: "Melanoma vaccines are designed to rev up the immune response to renegade cells. The vaccines contain antigens--molecules found on the surface of tumor cells--modified to look more dangerous to the immune system. Which tumor antigens are most likely to elicit a strong immune response against melanoma cells is a matter of debate.
"At Memorial Sloan-Kettering Cancer Center in New York, Philip Livingston is using a single antigen that is more common on melanoma cells than on normal cells. One drawback is that a particular antigen might not be present on all patients' tumor cells. Even if it is, it might not play a key role, so knocking it out might not kill the cells.
"To ensure that a vaccine includes tumor antigens from a specific patient,researchers like David Berd at Thomas Jefferson University in Philadelphia are using melanoma cells removed from each patient being treated. This method is more labor-intensive than utilizing an off-the-shelf vaccine. A middle-of-the-road approach, taken by Jean-Claude Bystryn at New York University, Malcolm Mitchell at the University of California at San Diego and others, combines three or four melanoma cell lines thought to contain nearly all possible antigens."

Radiation therapy damages the cancer cells, inhibiting their growth. It is a localized treatment, not usually used alone for melanoma, but sometimes used in conjunction as an adjuvant treatment when the patient has additional types of cancer along with melanoma.

Adjuvant therapy is any of the above treatments given after surgery in the hope of preventing melanoma from recurring, and are usually only given to patients with Stages II, III, & IV.
The recent findings with Interferon probably make it the preferred standard adjuvant treatment option available today, although there are many supporters of Interleukin and vaccine as well.
Many experimental protocols are in the works, and new ones may be introduced at any time. For example, a Tyrosinase Specific T-cell study at Fred Hutchinson/University of Washington shows promise. You will need to research the latest information, both when you first start to learn about your illness and periodically thereafter.

The key to survival often seems to be to treat melanoma in the early stages, so it might not be wise to wait for reccurrence before commencing some form of adjuvant treatment. Most protocols last about one year.

Since some treatments are controversial, and all have their supporters, melanoma patients should research all the above therapies as thoroughly as they can before making decisions. Among other things, be sure to ask your doctor to explain both the track record of the treatment, and how long the results tend to last. This is doubly important because research suggests that patients who "take charge" of their healing, rather than accepting their doctor's advice passively, have better survival rates. Seek out the best oncologists, since many times you will not get a second chance. And get a second opinion - melanoma can be very aggressive, so another opinion is warranted. It has also been suggested that significant improvements in survival rates occur when patients participate actively in a support group for people with cancer.
Try to understand the theory behind the therapy you are taking. A "whatever you say, doctor" attitude will do nothing to help you combat the disease. Most importantly, remember, doctors are human beings and don't have the magic cure for all of us, so although you may trust yours implicitly, their are others which may offer something with more benefit.

Because of the chance of recurrence, all melanoma patients should be examined regularly by a dermatologist or other physician with experience in diagnosing melanoma, and should also examine their own skin often. The experience level of the practioner is very important.

NOTE: Many specialists recommend that siblings and children of all melanoma patients also be examined by a dermatologist regularly, since there appears to be a genetic link.

5) Where can I find information related to melanoma and melanoma treatments on the Internet?

How to Recognize a MELANOMA
This tutorial by Arthur C. Huntley MD is excellent with 243 image files.

Clinical Trial Finder Mailing List: melanoma

Oncolink, The University of Pennsylvania Cancer Center Resource

Mike's Page - The Melanoma Resource Center

Diagnosis of Melanoma

M.D. Anderson Oncolog

Contents: 88. Diagnosis and Treatment of Early Melanoma
Summary: National Institutes of Health Consensus Development Conference Statement January 27-29, 1992. Re: What Is The Appropriate Management Of Patients With Early Melanoma Regarding Its Diagnosis And Treatment? *CancerNet (National Cancer Institute):

NCI's CancerNet Cancer Information

NOAH: Keyword Search

cancernet

MEDINFO Cancer Archives Home Page

CancerGuide: Steve Dunn's Cancer Information Page

Cancer Table of Contents - Vol. 77 No. 11

Cancer Information From The International Cancer Alliance

Merck Manual

 

MELANOMA CANCER SUPPORT MAILING LISTS

* MEL-L: internet mailing list for melanoma patients and caregivers
To subscribe: Send an email message to LISTSERV@listserv.icors.org
Leave the subject blank, and type one line only in the message:
subscribe MEL-L FIRST_NAME LAST_NAME
(Substitute your name for FIRST_NAME and LAST_NAME)

* OCU-MEL: internet mailing list for ocular melanoma patients and caregivers
To subscribe: Send an email message to LISTSERV@listserv.icors.org
Leave the subject blank, and type one line only in the message:
subscribe MEL-L FIRST_NAME LAST_NAME
(Substitute your name for FIRST_NAME and LAST_NAME)

* To see what melanoma looks like, check out Dr. Arthur C. Huntley's tutorial designed for medical students. The pictures effectively illustrate the key differences between melanoma and other common skin lesions.

Diagnosis of Melanoma

6) Where can I find melanoma information offline?

The National Cancer Institute at 800-4-CANCER offers packages of information about each stage of melanoma. They also can provide a list of active trials of new therapies.

The following is a book list of recommended titles which address the issues of living with and dealing with cancer:
Getting Well Again, O. Carl Simonton, MD
Love, Medicine and Miracles, Bernie Seigel
Peace, Love and Healing, Bernie Seigel
You Can't Afford the Luxury of a Negative Thought, John Roger and Peter McWilliams
The Healing Journey, O. Carl Simonton, MD
Choices in Healing: Integrating the Best of Conventional and Complementary
Approaches to Cancer, Michael Lerner
The 10 Best Ways to Boost Your Immune System, by Elinor Levy PhD & Tom Monte
(Houghton Mifflin 1997)
Cancer and Natural Medicine: A Textbook of Basic Science and Clinical Research, John Boik
Questioning Chemotherapy, Ralph Moss.
Cancer Therapy: The Independent Consumer's Guide to Non-Toxic Treatment, Ralph Moss
The Transformed Cell, by Dr. Rosenberg.
Saving Your Skin, Kenet and Lawler (A very popular book. You can get more information or buy it at Amazon.com)
Making the Right Choice: Treatment Options in Cancer Surgery, Richard A. Evans, M.D.
Choices in Healing, Michael Lerner
Beating Cancer With Nutrition, Patrick Quillan
Cancervive: The Challenge of Life After Cancer, Susan Nessim and Judith Ellis
Cancer As A Turning Point, Lawrence Leshan
The Healing Power Of Foods, by Dr Murray (a naturopath)
The Healing Nutrients Within: Facts, Findings and New Research on Amino Acids, Eric R. Braverman, M.D. with Carl C. Pfeiffer, M.D., Ph.D.
The Cancer Prevention Diet, Michio Kushi
A Time to Heal, Beatta Bishop-- cured using Gerson therapy
For parents:
Judylaine Fine, Afraid to Ask: A Book for Families to Share About cancer (William Morrow & Co., 1986) ISBN: 0688061958
Robin Simons, After the Tears: Parents Talk about Raising a Child with a Disability (Harcourt Brace, 1987) ISBN 0156029006
Robert Buckingham, Care of the Dying Child (Continuum publishing Group, 1989) ISBN: 0824512944
K. Lawrence and J. Stepanek, Newly Revised 1994 Parent Resource Directory ISBN: 9994928791 (in press)
Patricia Moynihan and Broatch Haig, Whole Parent, Whole Child: A Parent's Guide to Raising a Chjild with a Chronic Illness (Diabetes Center, 1989) ISBN: 0937721530
William Fintel and Gerald R. McDermott: A Medical and Spiritual guide to Living with Cancer (Word Books,1993), ISBN 0849935040
Jean Munn Bracken, Children with Cancer (Oxford Univ. Press, 1988) ISBN 0195056590
For children:
Sara Bonnett Stein, About Dying: An Open Family Book for Parents and Children Together
J. Cohn, And I Had a Friend Named Peter
J. H. Swenson, Cancer: the Whispered Word
J. Viorst, The Goodbye Book
C Krumme, Having Leukemia Isn;t so Bad--Of Course it wouldn'tbe my first choice
B, Mellonie, Lifetimes: the Beautiful Way to Explain Death to Children
M. Jordan, Losing Uncle Tim
P. Brack, Moms Don't Get Sick
S. Chamberlain, My ABC Book of Cancer
J. Gaes, My Book for Kids with Cancer
C. S. Parkinson, My Mommy Has Cancer
S. Kohlenberg, Sammy's Mommy Has Cancer
J. R. Thomas, Saying Goodbye to Grandmas
K. Gravelle, Teenagers Face to Face with Cancer
J. and P. Greebaart, When I Die, Will I Get Better?
L. Baker, You and Leukemia.

7) What about alternative therapies?

Many people are investigating cancer treatments outside of the standard medical approach. If you are interested in learning more about alternative medicine for cancer, a clearing house for information is:
The Center For Advancement In Cancer Education
Suite 100
300 E. Lancaster Avenue
Wynnewood, PA 19096
(610) 642-4810
The Kushi Institute has been helping cancer patients with diet and lifestyle changes for twenty five years. They have a world-wide network of certified macrobiotic counselors. Get a referral and more information from:
The Kushi Institute
http://www.macrobiotics.org
PO Box 7
Becket, MA 01223-0007
413-623-5741
f/413-623-8827

8) Are there any medications I should avoid if I am diagnosed with melanoma?

Some melanoma cells are dependent on estrogen for growth. Check with your doctor to assess the risk to you if you are on estrogen therapy, or taking any other hormones.

9) What is lymphedema?

After surgery, radiation, or chemotherapy to one or more lymph nodes, a secondary problem sometimes arises called lymphedema. The lymphatic fluids that would normally drain to the node are no longer being served by it, and begin to collect in the nearby tissues, causing swelling.

Lymphedema, naturally, is much less serious than cancer, and sometimes the doctor may not think to mention it. Nonetheless, it is extremely important to manage lymphedema properly, and learn about self-care. The more serious health concerns caused by lymphedema are infections and fibrosis in the affected areas. In addition, lymphedema can affect your mobility, it's uncomfortable, and it looks unattractive. If untreated, it can become worse over time. Your doctor can refer you to a physical therapist who specializes in lymphedema. Or get a referral and further information from:
National Lymphedema Network
http://www.hooked.net/~lymphnet
2211 Post St #404
San Francisco, CA 94115-3427
800-541-3259
f/415-921-4284

10) Where can I receive treatment using vaccine therapy?

Some of the better known clinics or hospitals conducting research and trials into melanoma vaccines are the following:
* John Wayne Cancer Institute, Santa Monica, CA (Dr. D.L. Morton)
* University of Texas: M.D. Anderson Cancer Center, Houston, TX (Dr. S. Lehga)
* Scripps Clinic, La Jolla, CA (Dr. Malcolm Mitchell)
* Memorial Sloan-Kettering Hospital, New York, NY (Dr. P. Livingston)
* Thomas Jefferson Hospital, Philadelphia, PA (Dr. David Berd)

11) What is a sentinel lymph node biopsy?

A lymphoscintography, also known as gamma directed sentinel node detection, is a way to detect the primary lymph node into which drainage would occur, so that fewer lymph nodes need to be removed for biopsy. The detected lymph node is then removed and biopsied.

12) Is it true that melanoma patients should not take Vitamin C supplements?

The chief imunologist's office at Sloan-Kettering recommends that their patients not take vitamin C. They said this in an unpublished report based on findings in their lab that Vitamin C accelerates melanoma. Vitamin C provides a channel for melanin and for the amino-acid, tyrosine. Tyrosine is under suspicion as a "bad guy" in melanoma. Other major cancer centers, including JWCI, see no problem with Vitamin C.

13) What are the side effects of treatments?

The vaccines generally don't have significant side effects. Interferon can cause discomfort for some people, while others notice little effect. Combinations including chemotherapy can have severe (but often temporary) side effects like nausea, dry heaves, exhaustion, and shortness of breath.

As with melanoma itself, each patient's situation and response to treatments will be somewhat different.

14) What is thought to cause melanoma?

No one knows exactly what causes melanoma, but several risk factors have been identified. One is ultraviolet radiation in general, but especially from severe sunburn in childhood. Secondly, people with large or irregularly shaped moles are more likely to get melanoma. It appears that a tendency toward melanoma could be inherited.
Melanoma lesions do not necessarily manifest themselves in areas that have EVER had direct sun exposure. In other words, it is imperative to check parts of the body that have not been directly exposed to the sun-on the head under a full head of hair, behind the ears, genital areas, between the toes, etc.

15) What are monoclonal antibodies?

Monoclonal antibodies target a specific antigen. They may one day be useful in cancer diagnosis and treatment. At the present time, they are being studied in clinical trials. NovoPharm, a Canadian pharmaceutical company, said its Gliomab-H, a human monoclonal antibody, is an active agent against brain tumors, melanoma, and neuroblastoma. Unlike most forms of conventional cancer therapies that target only dividing cells, Gliomab-H targets cancer cells that are both resting and actively dividing.

16) What is a PET scan?

The PET scan (Positron Emmission Tomography) is a relatively new technology and there are few PET units in medical centers at the present time. The scan measures "metabolically active sites" in the body. PET has about 90%+ accuracy for detecting all types of tumors, but since melanoma is so active metabolically, PET has even better accuracy stats for detecting melanoma.

17) What is Essiac Tea?

Essiac Tea is an herbal combination reputed to cure cancer. It is also marketed under the name Flor-Essence. The tea is available through the natural products distribution channel, and your local health food store can order it for you. Ralph Moss PhD, gives a list of components of Essiac and other info at: http://www.iinet.net.au/~essiac/1essiac7.html

18) What are the recommended tests to follow up with after a melanoma diagnosis?

Commonly, doctors recommend complete checkups every 3 months for 2 years, then every 6 months for another 3 years. At these checkups, your doctor will probably do a complete skin examination and palpate all the major lymph node groups and the abdomen. Along with these examinations, many doctors order a lung x-ray every 6 months and a lung, brain, and abdominal CT scan every year. Other diagnostic tests may include the PET scan and blood tests.

19) What is the Gamma knife?

The Gamma knife is 204 localized beams of radiation pointed directly at the tumor. It does not penetrate the surrounding area. It is performed by three doctors-a neurosurgeon, a physicist (at the computer) and an oncologist. The radiation is highest at the center of the tumor and breaks up the DNA so the tumor can no longer replicate. The Gamma knife is a stereotactic radiosurgery, cobalt source machine.

20) What are the different types of machines for Stereotactic Radiosurgery?

*The linear accelerator provides very precise, uniform irradiation for stereotactic radiosurgery of brain tumors. Importantly, this device allows "fractionation" of treatment that allows the safe administration of a higher dose of radiation than can be given with the machines using multiple cobalt sources. Fractionation means that the treatment is divided into multiple smaller doses (fractions) of radiation. The reason for fractionation is to improve the radiation effect on the tumor while minimizing the effect on the normal brain. Normal brain tolerates small, daily doses of radiation relatively well. The tumor does not tolerate the small daily doses, resulting in control of the tumor. By exploiting this difference in response, the fractionated treatment can be very effective in reducing or even eliminating the tumor while sparing the normal brain.
The linear accelerator produces radiation having a higher energy than that produced by the cobalt-source machine. Further, the collimators or beam-shaping devices can be larger for the linear accelerators, resulting in much greater uniformity of dose for the larger
tumors.

*The cobalt source machines are also very precise. However, because the frame has to be bolted on to the patient's head with metal bolts, fractionation of treatment is not possible. Further, the cobalt source machines have smaller collimators that may render larger tumors more difficult to treat with a homogeneous dose of radiation.

*The proton radiosurgery derives its advantage from the so-called "Bragg peak" that describes deposition of radiation dose from proton beams. As the
protons in the beam slow down in tissue, they give up (deposit) disproportionately more radiation per unit of travel. Just before the protons stop, they give up almost all their energy, resulting in a "peak" at that depth in tissue. The depth can be precisely defined by the energy imparted to the proton beam by
the cyclotron that produces the beam. Proton beam therapy is useful for many skull base tumors and vascular malformations of the brain.

*The Peacock system uses "inverse" treatment planning to make a very conformal distribution of the radiation dose in the tumor. It works in a way similar to a CT scanner to precisely determine the amount (weight) for each of manysmall beams that irradiate the target. This system also allows fractionation.
Ref: Johns Hopkins-Brain Tumor Treatments
site at: http://www.med.jhu.edu/radiosurgery/faq/

21) What is the difference between an undifferentiated cancer cell and a differentiated cancer cell?

An undifferentiated cancer cell is one that looks and acts very different from a normal cell, while a differentiated cell looks pretty close to a normal cell. There are degrees of differentiation in between. The more poorly the cancer cell is differentiated, the more aggressive it is.


The MEL-L FAQ was developed by Gurudarshan Khalsa to get much-needed information and resources into the hands of melanoma patients and support people and is the official page of MEL-L. Excerpts from contributors' responses are attributed where possible. Pointers to WWW resources are suggested for further investigation. Hopefully, no copyrighted material has been wrongly reproduced. Upon awareness of any copyright matters we will remove it and seek the appropriate permission.


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