I was diagnosed in Fall of 2010 with stage IV melanoma. My support was my family. My mother took me in and cared for me during my treatment. I would say the best advice I can give is to get to a melanoma specialist. This is not an ordinary cancer and truly needs a specialist. My medical team was truly amazing and they saved my life! They consisted of Dr. Omid Hamid at the Angeles Clinic and Dr. Morton at the JOhn Wayne Cancer Center in Santa Monica, CA. These men are dedicated and very-very good at what they do! Lots of prayers helped as well....I was very sick.
Skin Cancer - Melanoma Questions
- Questions Emailed to WhatNext
Melanoma skin cancer, how did you survive?
Asked by WhatNextEmails on Monday, March 11, 2013
Melanoma skin cancer, how did you survive?
We need your help. This month we are putting together a collection of articles for those newly diagnosed on what actions survivors took to beat their specific type of cancer. Please take a few minutes to share your experiences and advice for those newly diagnosed, and your posts might just get included in our articles. Feel free to share whatever comes to mind. Here are some more specific questions to help get the juices going: What kind of support did you have? Were there things you did that really made a difference? How do you go about finding your medical care team? Who made up your team? What resources did you find that were most helpful to you?
4 Answers from the Community
I was diagnosed in summer of '12 with stage III melanoma. Surgery removed the tumor with clear margins. This was discovered at a routine dermo visit and not because of any symptoms. I have opted not to do any further treatment at this time outside of monitoring. I do dermo checkups and blood work every three months and scans every 6. All clear with perfect marks in all areas so far.
I chose this path for a variety of reasons: There really isn't that much out there other than interferon (the other drugs on offer don't promise any better results or lesser side effects) and I have a high intolerance to pharms across the board. Only one node out of 27 showed signs of cancer. Very healthy outside of this with a history of non-illness (don't even get the flu without flu shot (but last flu shot I had put me in bed for three weeks)). No family history of cancer or serious illness with average life span into late 80's mid 90's. No unhealthy habits to break and none in my past.
This was my decision based on my personal experience (past surgeries for broken bones, reactions to basic injections as a child and adult, resistance to common and not so common diseases, health history in general) and not taken lightly. I would urge everyone to make their own decision based on what they feel is right for them and not based on someone else's experience or decision.
I am a Stage IV melanoma patient, first diagnosed in 1990. By 2008, the cancer had spread viciously, and my prognosis was grim. Throughout my ordeals, I insist on joyful living. I have relied on standard medicine, and I make no claims that my own activities have increased my longevity, but if fun boosts my immune system, then I am helping myself. My doctors are surprised that I keep crawling back from the abyss. They say, "Whatever you're doing, keep doing it."
My joys are many, even after struggling through 5 surgeries (2 brain surgeries), 2 kinds of radiation, and 2 kinds of immunotherapy (interleukin-2 and Yervoy, also called ipilimumab.) Outdoor activities lift my spirits. I love tent camping, downhill skiing, hiking, and swimming in clear lakes and rivers. I throw myself into ecstatic (improvised) dance, and I gently stretch weary bones with yoga. I play electric guitar as an avid hobbyist. I spent a rewarding year as caregiver to my mother and stepfather during their final days.
A support group for women with late stage cancer gives me a weekly haven for sharing triumphs and tragedies. There, I learn from others' struggles, and I laugh heartily and grieve deeply.
I plan for the future. I survived long enough to take a solo, cross-country tent camping trip which I wrote about in my book, Melanoma Mama: On Life, Death, and Tent Camping. I also squeezed in a dream-come-true trip to Italy where I studied Italian in a language school, and lived with an Italian family.
I wrote and published Melanoma Mama, a book about living with joy in the midst of medical madness. Just as the book was going to press, I was diagnosed with a brain tumor, but I survived, and have been reaping accolades for my writing.
I don't consider myself a "survivor," because I have not beaten cancer. Due to my Stage IV status, I am always entangled in a tango with death, living from scan to scan with constant uncertainty. One of my dearest friends says that he's not a man of prayer, but that he often tells death, "You can't have her yet. We're not done with her here." Basking in such fierce love has helped me thrive in spite of this disease.
Constance Emerson Crooker
Author of Melanoma Mama: On Life, Death, and Tent Camping
Over the past fourteen years, my melanoma journey has been one where I have been fortunate to have fantastic support from my family, the good fortune to have had top medical providers, and I seemed to be in the right place at the right time.
My melanoma journey started in 1998 and this is where my good fortune with doctors started when my eye doctor questioned a mole on my left cheek. I was referred to a dermatologist who then referred me to a surgeon. Both the dermatologist and surgeon were well versed in melanoma and the initial treatments required. My initial biopsy was Clark’s Level IV and protocol called for a Wide Local Excision (WLE) and a Sentinel Lymph Node Biopsy (SLNB). The WLE came back with clean margins and the thirteen nodes removed during the SLNB all came back clear.
While my wife was with me through this first part of my journey, I elected to not tell my two children. I can still remember the day I picked my daughter up at college for Christmas break. I still had a large bandage on my neck and it was obvious something had happened. She was very hurt that everything had been kept from her and I promised then it would never happen again.
I was Stage I and started a regimen of annual derm exams, blood work, and x-rays. As each year went by I thought less and less about melanoma. Fast forward to 2009.
Because of a persistent cough my PCP sent me for a chest x-ray. A CT scan, two lung needle biopsies, and a PET scan; its back, Metastatic Melanoma in my lung and I’m now stage IV.
My good fortune continues and the oncologist working with me suggests I see someone who specializes in melanoma and he refers me to a melanoma specialist in Connecticut. It is here I learn there are very few treatment options available. While it was my decision to make, my oncologist, my wife, and I decide on treatment with Interleukin 2. IL-2 is a very rough treatment and is administered in the hospital in an ICU type environment. Telephone calls from my out of state son and visits from my wife and daughter made the days bearable, especially the homemade chicken soup brought in.
The IL-2 turns out to be ineffective and there are no other viable options for me in Connecticut and the estimate is six to eight months until end of life. My oncologist talks to me about a clinical trial he is aware of and he thinks there are still some openings. I am referred to a melanoma specialist in New York City, my good fortune continues with doctors and now I am in the right place at the right time.
The clinical trial is for what is now called Zelboraf. To be accepted in the trial my BRAF gene needs to have the v600e mutation, I need to pass a battery of tests, and I have to have had prior unsuccessful chemotherapy treatment. I meet all the requirements and I start in the trial on March 3, 2010.
As I write this its 2013 and the ides of March are upon us. I’m still in the trial even though Zelboraf got FDA approval in August 2011. I still worry about the drug no longer working but I do not obsess over it. There are other new melanoma treatments and a number of exciting new trials in progress.
What can you do if you are recently diagnosed? Surround yourself with melanoma specialists. Educate yourself, today’s internet resources are vast. There are many online forums you can participate in or just read on. Learn from others who have had the same experiences. Look for and accept support from your family, you never know when you might need that homemade chicken soup. Finally, best of luck to you, you can beat melanoma.