Melanoma International Foundation (MIF) is a non-profit organization created to provide scientifically sound guidance & support to melanoma patients and their caregivers. Our mission is to develop personalized strategies with patients so they may live longer, better lives.
For 8 years, I have been managing the largest melanoma awareness event. Melanoma International Foundation or MIF, brings over 1500 people together to support, encourage and honor loved ones. Our free screening has most likely found melanoma early when it is curable. I have listened to the awards ceremony for all these years, hearing the stories of courage, and of sadness. I walk away from the event each year with a full heart knowing that MIF has brought these families together and we are making a difference. I have no medical background, I am not involved in the patient navigation, I barely knew what melanoma was when I started with the foundation. But, apparently I picked up a few important things over the past 8 years.
And so the words from my husband on the phone unnerved me “I got the biopsy results. That spot you saw is melanoma.” Since in his 20’s my husband has had numerous spots looked over and biopsied. Sometimes, it is nothing. Sometimes, it is basal cell. No big concern. This one spot looked different. This one spot, I told him, had changed. I see that neck every day… it looked different. “Please go get it checked”, I said. He insisted the doc had seen it every time and said he is not concerned. Months later, he had a tiny spot in his ear bothering him, so my husband decided to make an appointment. “Please,” I urged, “have them look at the spot on your neck too.” He sighed, “I will”.
This appointment Zack scheduled was with a different doctor. This doctor saw the spot on his neck and immediately was concerned. 1 week later he is reading the biopsy results saying it is malignant melanoma .4 Breslow level.
Well, what does that mean? How much of a concern, what do we do? I took a deep breath.
We have the best resource at our disposal. So I picked up the phone and sent a text to Catherine our president/founder, and navigator, “Zack has melanoma”. Within minutes she is telling me what information to pay attention to: who did the pathology? What is this number of the depth? And explained the details of what to expect. She said “tell me the doctor’s plan and we will do this together. Everything will be OK.”
Luckily, Zack’s melanoma was caught early and after removing (a rather large) area from his neck, he is fine and that is all the treatment needed. He is very fortunate.
We are patient advocates. We navigate you through your melanoma diagnosis. I have said that a thousand times to those who ask what MIF does. I know what it means, I know what Catherine does. I never thought I would have to utilize it, and until I did, I never realized how important the foundation really is. I think I never fully understood the questions we answer, the support we give, the fear that we calm.
Trust your gut, if something seems off, get it checked! Listen to those who see you every day, if something is different get it checked! Do not be afraid to see a different doctor. When you do not understand something, look for answers from a valid source.
Yes, I work for MIF; I have a direct line to Catherine. But so do you! Catherine sits every day reading the forum, answering the phone and helping patients navigate melanoma. She is, very literally, a phone call away to anyone. The reassurance, support, advice and comfort, are just a phone call or email away.
Although we now have some promising therapies for melanoma treatment, the promise for melanoma treatment lies in clinical trials where new agents are tried out in scientific fashion for approval. It is MIF’s contribution to research to help increase the enrollment of patients to melanoma clinical trials. One reason there is a shortage of patients in melanoma clinical trials is because of the availability of newer effective treatments. We have provided some general information on how clinical trials operate below, along with general questions to ask your medical team when determining if melanoma clinical trials are for you.
The basic structure of clinical trials:
Tests for toxicity and uses increasing doses to find the best dose Phase 2
The melanoma drug has passed the toxicity testing and is now being tested for effectiveness Phase 3
Compares the new agent against standard treatment for response rate Phase 4
The drug is approved by the Food and Drug Administration and still being followed for adverse events and response rates.
Important questions to ask before enrolling in a melanoma clinical trial:
What is the purpose of this study? Who is sponsoring it? How is it reviewed for safety? How many patients will be enrolled?
What kinds of tests and treatments must I go through? What factors might prevent me from entering the trial? Will current therapy preclude my enrollment?
What are the potential side-effects? Get specific details about how the drug is administered and what any relevant studies to date have shown about side-effects and/or response rates.
Will some participants receive a placebo and others get the real thing? What does double-blind mean? Many studies are set up to determine how patients who receive the treatment do by comparison with those who receive nothing. That isn’t fair to the patient and an effective comparator should be offered. Also, many trials are “double-blind”: neither the doctor nor the patient knows what the patient is getting.
Will my insurance pay for this, or the pharmaceutical company? What about scans and other screening tests, who covers that cost? How about housing or travel costs, are they reimbursed?
What happens once the trial is over? Will there be follow up? Will I be told the results of the study?
Please be aware that you can leave the trial at any time. Also, if it is clear that you are getting worse, the trial will end for you. Your medical team may or may not suggest a clinical trial for you, and that may be dependent on what their institution is offering. Here is a glossary of terms to ease confusion: FDA Clinical Trials Glossary
We Can Help:
Deciding on a clinical trial for melanoma is not easy. We at Melanoma International are dedicated to helping you find the best clinical trial to fit your needs by discussing all options, side effects, and locations of trials. Please contact us on our helpline: 1-(866)-463-6663 or 1-(610)-942-3432, or email firstname.lastname@example.org for personal assistance.
We are here to empower you with information on melanoma clinical trials and help support you on your decision for melanoma treatment.
Here are some links to search for clinical trials:
Cancer Trials Support Unit
The Cancer Trials Support Unit (CTSU) is an NCI funded program to facilitate participation (by both patients and physicians) in phase III NCI sponsored Cancer treatment trials.
National Institutes of Health search site for clinical trials, and one of the best search engines for finding a clinical trial nationally or internationally