Who is a Survivor?

The Oxford dictionary defines survivor as:

1.“A person who survives, especially a person remaining alive after an event in which others have died.”

2.“The remainder of a group of people or things.”

3.“A person who copes well with difficulties in their life.”

 

            But “survivor” is more than just a noun, a word. It is a feeling, it is a state of being. My wife was diagnosed with melanoma in August of 2004. She was a survivor until May of 2008 when she lost her battle with cancer. I watched her suffer through scans, drug therapies, surgeries, and side effects. Myself and my children staying beside her through this journey and helping where we could. Witnessing the hell she went through created an image for me. I thought, this is what a survivor is.

            In 2014 I was getting a spot on my chest looked at with my dermatologist. It was nothing, just an ingrown hair. During the skin exam a spot on my back was noticed and biopsied. It tested positive and the next week it was removed. It was found as “in situ”. Other than regular skin checks not other treatment was necessary. There was some discomfort while the incision healed but that only lasted about a month. How could I call myself a survivor after witnessing what a survivor is with my wife?

            I look back at the Oxford dictionary version and focus on #3. “A person who copes well with difficulties in their life”. This by far is the broadest while still being the most accurate. The truth is our goal is that a melanoma survivor is to have an experience like mine as opposed to my wife’s. And the circle of survivorship expands well beyond just the person being treated. The family, the friends, the caregivers, the medical professionals. All these people carry the burden with the patient and all “cope well with difficulties”. We move forward helping with prevention, early diagnosis, and treatment programs. We raise funds for research to come up with a cure. It is how we “cope well with difficulties” and survive.

My fellow survivors, we have but one goal. And that is to simply create more survivors. 

 

 

Speakers at November Melanoma Symposium

 

Click on this link to view the speakers from the November Symposium.

Kelly Nelson,M.D., Artificial AI and Melanoma Diagnosis:Are Dermatologists out of a job?

Sancy Leachman, M.D., War on Melanoma Program Updates and Plans for the Future

Melanoma Educational Updates (scientific): Drs. Johan Vetto, Brendan Curti, and Amanda McCullough

Expert panel O & A Session: Drs. Nelson, Curti, Leachman, Vetto, McCullough, and Wisco

https://echo360.org/section/7acdae3c-b8d9-4ae2-991d-71f6b12a6439/public

Summer is ending, protection does not

         Summer is quickly coming to an end. It has been a very trying year with the fires and the heat. I am thnakful of the fire personnel that put their lives on the line daily for us. If you personaly know one please send out a thank you. The reality for them that the idea of applying and reapplying sunscreen under their working conditons is unrealistic. In a perfect world they would have regular breaks and suncreen would be a part of their safety training. Again, if you know one, please help make them aware of this extra risk they have been exposed to.  

         Shifiting to cooler days and a lower sun does not mean we are now safe. Pretection with clothing and sunscreen will need to continue in our daily lives. As winter approaches the outdoor activities will move to the slopes. Skiing, snow boarding, tubing, etc. are popular in the nearby mountains. The thinner air and clear skys are a perfect storm of increased UV exposure. The one thing that is better is the heat will not turn that portable tube of suncreen into a thin liquid (this kept hapening to me). But at least we will have more pockets.

Stay safe, stay aware, keep protected 

Merkel Cell Carcinoma (MCC)-Melanomas adopted brother

Robin Zimmerman

I have a friend that is presently being treated for Merkel cell carcinoma and started radiation about a month ago. So I thought I might write a little about it. Your first thought might be, “What is a Merkel cell?” I’ve never heard of it. A merkel cell lies on the outermost layer of the skin. They were identified in the 1800’s by a Friedrick Merkel, a German anatomist. Over the last 100 years their complete function has not been identified but they are found  over the body in varying amounts with the highest density on the fingertips, lips, and face where touch sensitivity is at its greatest. They have also been found to produce hormones but the function of this is still unknown. So this is still very new territory.

Merkel cell carcinoma has been rare but, like melanoma, the numbers of occurrences has been increasing rapidly. Diagnosis can be a little random since doctors are rarely looking for it when it is found. Most of the time it is discovered when a biopsy is being performed for another form of skin cancer and it turns up. It is a like going for a walk and hearing hoof beats behind you. You turn to look at the horse you expected but instead you find a Zebra. An early diagnosis can mean minimal treatment and an assurance of being cured. But it is aggressive and can metastasize in its early stage.

The cause of Merkel cell carcinoma is still a mystery though a few pieces of the puzzle are beginning to come to light. Like melanoma sunlight is a factor to its growth, so yet another reason to follow the safety precautions we recommend with melanoma prevention. Patients with suppressed immune symptoms are at a greater risk of developing this particular cancer as well. Buts those whose immune system were able to heal their primary tumor without intervention fair better since their immune system was strong enough to fight it off. In 2008 a common virus, polyomavirus, has been found in a vast majority of the cancer cells, at least 80% of the time. This virus rarely causes any symptoms other then the cases where it contributes to triggering the MCC.

The treatment options are not dissimilar to melanoma. When the risk of the tumor spreading is relatively low surgery alone can be all that is recommended. Though often a series of radiation treatment sessions can be added to insure the risk of local recurrence is minimized even more. It may be possible to remove the tumor with a Mohs micrographic surgery when on the face and there is a need to limit the margin it 1cm. Since such a small margin is taken radiation is almost always recommended in this case. Chemotherapy can be used initially but the MCC develops resistance to these drugs very rapidly. Immune therapy started to advance about 10 years ago and in the last 5 years a version using immune checkpoint inhibitors show the best result when a skin cancer of any kind metastasizes. There are presently 4 drugs which do this and can be used individually or in conjunction with the others or in conjunction with other treatments.

The prognosis and chances of beating the disease are unique to each individual. How early it was discovered and the state of a person’s immune system is a key contributing factor to chances of survival.

Resources: https://www.merkelcell.org/

Corvallis Aim at Melanoma Walk

Cathy Law

The Corvallis Melanoma Walk & Fun Run took place on Memorial Day, May 29th, 2017! Twenty-seven people, including three melanoma survivors and several others who lost loved ones to the disease, gathered at the Corvallis High School track to run or walk from 9-10am. A table of resources and a table of snacks and drinks were available for participants before, during, and after the event.

Here is a link to photos on our gallery

http://www.wearesolsurvivors.org/2017-corvallis-aim-walk/

What is a "Survivor"

Robin Zimmerman

Today is Nationa Cancer Survivors Day. But what is a "Survivor". The example that comes to mind when we hear "survivor" is someone that goes through hell with treatment. But there is another way. Early detection and awareness can make you a "survivor". Every survivor can be the one that  "caught it early". How great would if be if the necessity of treatment for late stage cancer were a rarity. When we can say "Remember when cancer was found so late that you had months, even years, of treatment to get it under control?" More research is being done for prevention and early setection for every cancer. Awareness and education programs have been growing. You cant go a day anymore with a reminder that early detection saves lives. We can all learn from these as new information comes out.   

War on Melnoma Event

There was a great turnout for the event on Saturday. The weather was overcast and dry, perfect for the AIM fundrasing walk. There were survivors, their supporters, those honoring someone they lost, and some who have not had melanoma touch their lives but realize the risk. Melanoma does not discriminnate: old or young, rich or poor, male or female, everyone is at risk. Vendor tables with researchers and advacocy groups were busy increasing the knowledge base of all that attended. After the walk a Q & A session with a panel of doctors was held and was well attended. There is no substitution for this type of interaction. From 1-2 Dr. KellyGrifftith- Bauer, MD presented her research project. Her "Scar Project Gallery" in inspiring. It teaches us about the people behind the scars. What their journey has taught them and what they hope from the future.

Erin Moran

          Erin Moran created an iconic character portraying Joanie Cunnigham on the television series Happy Days. She then reprised this role in the series Joanie love Chachi. Last month, at 56 years old, Erin Moran lost her life to an undetected squamous cell carcinoma (a common form of skin cancer) in her throat. This demonstrates just how insidious skin cancer can be. When internal it generally does not produce any noticeable side effects until it has advanced into a later stage. Researchers have been working to perfect a simple blood test which would detect these unseen cancers but this may be some time off. While this is being developed we at SolSurvivors Oregon will continue our efforts with what the technology we have allows. We raise awareness and advocate for regular skin exams, prevention, and self checks. We know for now these are still the best practices to increase the survival rates of any who are diagnosed with skin cancer.

       https://startsat60.com/trending/news/erin-morans-husbands-letter-breaks-hearts-on-social-media    

Robin Zimmerman        

A Laypersons experience at the 2017 Melanoma Research Alliance Scientific Retreat

Melanoma Research Alliance Scientific Retreat

February 13th-15th, 2017 Washington DC

A Laypersons Experience

I might be a layperson, in that I do not have any formal training in the medical profession, but I have spent a lot of time over the years living with and studying melanoma. My wife was diagnosed in 2004 and, after multiple surgeries, treatments, and time in a clinical study, passed away in 2008. In 2014 I was diagnosed with melanoma but had the benefit of past experience to catch it early. Also, I have never travelled very far from home so my flight across the country was a new experience and left me with a sense of awe. It amazes me how we can travel the entire width of our country in half a day. I had a stopover in Minneapolis. As we took off and began the last leg of the flight I had a view of our country I’d never had before. I had pictured everything looking like Oregon, not realizing how flat most of our country is. This emphasized to me how important a person’s experiences and perspective really are.

I arrived in Washington around 5pm eastern time and checked in at my hotel. My first meeting was an informal dinner at 6:30 with the organizers of MAC (Melanoma Action Coalition). Neil Speigler and I shared an all too common story of losing a spouse of decades after a diagnosis, of what I thought at the time as a harmless skin cancer, melanoma. During dinner we shared out stories, our passions, and our goals. MAC was brought together to help all these nonprofits to support each other with our strategies for fundraising and awareness. They are a new organization and will be growing over the years. In the first year they have more than tripled its membership.

The next day I was up at 6:30 for breakfast and to review the information packet given to me. My first official meeting was scheduled for 10am with MAC. This began with introductions. Through the next few hours information was presented on education, awareness, and prevention, along with how each group ran their own projects. Information about their projects was distributed so we could all learn and use what has been working for others. We ran long on time and adjourned before finishing to attend the MRA forum. We continued our discussions the next day in an informal meeting in the hotel lounge.

The Monday afternoon forum presented by the MRA started at 1 and ran until 5:30. We quickly introduced ourselves and any organization we were associated with. Speakers covered information about projects that are presently moving forward. Work by nursing to add training for nurses to be able to identify suspicious spots when a patient is being admitted to a hospital and examined for bedsores. Dr. Weinstock presented his online class for Primary Care Providers to help improve their ability to confidently and efficiently refer a patient to a dermatologist. Then Dr. Luke spoke on clinical trials and followed with a primer on the science of the retreat we were attending.

            That evening an informal reception dinner was held at the hotel. This was a menu of dim sum and was set up with small tables which leant itself well to the goal of getting everyone to mingle. I had the opportunity to meet with many people with many different backgrounds. There were a couple in particular.  Jim Baker of Idera Pharmaceuticals gave me real insight into the structure and goals of the company he is with, and a little on what was on the horizon. Another was Assistant Professor Alexander Boiko of the University of California, a very amiable person who asked me to introduce him to meet Dr. Leachman. Visiting on this informal level really gives a person a perspective of researchers you will never get from just reading reports and attending lectures. That night I made it to my room and spent a few hours reading through the materials for the next day and typing up notes from my first day. 

            Tuesday started early as well. Breakfast started at 7 and we were able to meet back up with the friends we had made the night before. The retreat began with opening remarks by Michael Kaplan (MRA President and CEO), Louise Perkins (MRA Science Officer) followed with an introduction by Ross King and welcome video from President Jimmy Carter. I can tell you Mr. Kaplan was the most accessible person you would ever meet. He was always ready to greet you with a smile and make a person welcome. Again, I received a good lesson in perspective.

            After the morning lectures there was a fireside chat during lunch with a conversation on cancer causation and cures. This offered a question and answer session with Siddartha Mukherjee from Columbia University and author of “Cancer: The Emperor of Maladies”. Antoni Ribas of UCLA. And Steven Rosenberg of the U.S. national Cancer Institute.  This was very enlightening and a few good questions opened many doors for conversations.

            Tuesday evening was a dinner at Teddy & The Bully Bar. This was a wonderful Theodore Roosevelt themed restaurant a few blocks from the retreat. I will say the reception was a bit crowded but I again met some wonderful and diverse people. This was a sit down affair with multiple courses served and plenty of time to interact during the meal. Across the table from me was a group from Israel from both Tel Aviv and Hebrew Universities. This was rounded off with conversations with doctors from Munich and Zurich as well. So many around the world working on similar goals gives a person a lot of confidence that successes in research will only continue. After dinner the cool walk back to the hotel was a welcomed relief and sleep came quickly that night.

            The next morning was the final breakfast and I had time for just a couple of the speakers before needing to catch my flight home. During breakfast I met with another doctor from Israel. This was educational, but not about melanoma research, but on the difference in patient care. This doctor is a clinical researcher with a number of patients. Contact with their patients is an imperative at their facilities. Each patient has the doctor’s email and cell phone number and has confidence of having support at any time.

After a couple more speakers I went back to my room and packed. A short cab ride to the airport, three attempts to get all the way through the TSA security, and I was waiting for my flight. Packed tight as these flights can be at least this plane had an entertainment system built into the head rest of each of the seats. This did help pass the time on the long flight. I did have a bit of a issue during the changeover in Atlanta. It seemed the flight was overbooked by two seats and since my seat was not pre-assigned I had to board last in the chance there wasn’t room. I was lucky as someone did not show up and I was able to board. We left Atlanta on a sunny afternoon. I had to keep the window shade down most of the flight because of the heat and was only able to peek out on occasion. By the time we crossed the Cascades it was evening and the weather had changed to rain. Passing over Portland and Vancouver at 6pm I was able to see the trail of headlights on the freeway. I found myself thinking of my daughter in that traffic on her way to the airport to pick me up. All these people, including my family, will at some point have cancer touch their lives in some way. If not themselves, a family member or friend will someday be diagnosed with a cancer. I have now seen firsthand what is happening in this area of cancer and am confident the progress in fighting all cancers will never stop. I hope my perspective will increase your hope and can motivate you to help in some way as well.