No matter what you’re fighting – cancer is a game changer.
You will never leave the same way you arrived. I’m building this Melanoma Survivor’s Manual from the perspective of a melanoma survivor. I hope you will join me to build a resource center for melanoma warriors and their caregivers to connect and stay at least one step ahead in the toughest marathon you’ve ever run.
Melanoma came into my life on September 7th, 2009, the day after my 45th birthday.
My body had started to short-circuit – I felt this strange numbness all over. A bunch of tests later doctors concluded my numbness was likely caused by the onset of multiple sclerosis (“MS”). How could this be happening to me? I’m an active, healthy and never sick chick. I didn’t even have a regular doctor! Now I needed a neurologist. Fast forward 77 days On November 23, 2009.
I was diagnosed with Stage 4 Metastasis Melanoma Cancer. My doctors could never determined where my “primary” was located (where the cancer started), though they did know it did not appear as a typical skin irritation or mole. In fact, my doctors believed the primary was likely in my lung. My diagnosis did not come easily or quickly. At that point Melanoma protocols had been stalled for nearly 15 years, with no progress towards extending life expectancy for Stage 4 metastatic melanoma patients.
Clearly, the odds weren’t with standard protocols – my only real option was to consider a clinical trial. Getting into a clinical trial and getting treatment was not easy. Turns out you’ve got to be a detective. You also need a “Cancer-ierge”, or Cancierge, my name for someone who can help you navigate the process. Your Cancierge writes the questions you need to ask at your appointments, takes notes and stays by your side. My Cancierge is my husband Mike – he’s been amazing at his new job! Plus, he can tell a good joke – laughter is the most underrated form of treatment.
We started at Georgetown University Hospital, more because we lived near the hospital than for anything else, but they didn’t focus on Melanoma Cancer. I met my first Melanoma Specialist at Memorial Sloan Kettering in New York, but timing issues left me without an option in the clinical trial I wanted. My doctor at MSK suggested Vanderbilt, but that didn’t work out, either. I then tried Texas Oncology and The Angeles Clinic but finally struck gold at UCLA.
Since we live in a suburb of Washington, DC, this was going to be a big commute. It took me until February 28 before I could start the clinical trial at UCLA – it was a Phase I trial for PLX4032 (now known as Vemurafenib or Zelboraf). I’ve been active on this clinical trial ever since, and during this time this drug has not only stopped my cancer from growing, it’s now only a fraction of its original (baseline) size. I’ve had side effects – hair loss, skin rash, cysts everywhere, night sweats, nausea and diarrhea. But, all in all, not bad relative to what I could have happened. My most recent PET/CT scan didn’t show melanoma progression. Heck, nothing on that scan lit up! I’m hoping that PLX4032 is the magic pill that makes my Melanoma go away. PLX4032/ ZELBORAF has been one of the fastest drugs ever approved by the FDA and it is changing how we fight cancer. During this odyssey my husband Mike and I learned some interesting facts.
First, you need to advocate for yourself – reach out to friends, family and friends of friends. YOU and your team need to determine the right path for you and your disease. There isn’t a “Melanoma for Dummies” users guide available. I have learned that getting connected can save your life. I hope this site becomes a user-friendly resource that will connect melanoma patients with the latest treatment options and other patients that are either on your treatment or considering your treatment. I have learned a lot from other patients on PLX4032.
It is nice to know there are other folks out there dealing with your same side effects, decisions and resolutions. The medical community is close to finding a solution to this disease – it’s just a matter of time. The goal is to hang in there until that cure comes along. Helpful Tips: Research which hospitals are the leaders in your type of cancer, review your options and their statistics. US News and World Reports assesses hospitals every year at http://health.usnews.com/best-hospitals. Clinical trials may produce better results than the current standard of care. Visit www.clinicaltrials.gov. Interview your oncologist – are you are comfortable with them?
You’ll be spending a lot of time with this person, and its my position that you need someone who is positive and has a good delivery. Ask questions and keep your copies of your own records. If you don’t understand, ask / write everything down and make sure you ask for copies of all your scans (CT/PET/MRI).
Get a big accordion folder and label each section. It will come in handy one day. Everything takes a lot of time, and time goes slowly when you’re waiting to be treated. Make sure you have a good book – buy a Kindle. Be your own Advocate, and/or find someone who will be your Advocate. A good Canceierge could save your life. Ask for help – you’ll be surprised of the results. Email and call friends and family – this is not a time to be shy! Think outside the box. Combining Eastern and Western philosophies can work miracles. Consider yoga, Reiki, mediation, acupuncture, prayer, energy work, or anything else that keeps you feel positive and moving forward. Eat “healing foods”. Remember, “Garbage in, Garbage out”. Veggies with bright colors and big leaves are your new friends. Stay away from processed stuff. You are building a castle.
Every time a door closes, another one opens. It’s up to you to find that door! I’ve learned to be flexible, appreciative, value each day and enjoy every moment. Some people live 90 years and never understand the importance of this.
Start winning your fight today!
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