Once a patient, always a patient

“Ugh….I just finally stopped being scared.” “ I will get checked. I just hate it. I feel uncomfortable every time.”

                After having an in-situ melanoma removed a friend of mine thought she was done. Unfortunately, this is still just the beginning. No treatments other than the cosmetic repairs that were needed. But an understanding the risk level she is now, and the regular skin checks she will need to have. Every time, worried that another spot may be a found, and a positive diagnosis will be given. There are theories on what and how melanoma is triggered. It is almost certain that it takes a combination of things to create a melanoma. And having had a single diagnosis means you must have had all the ingredients at some point and are probably still carrying them.

                Most cancer, in a simplistic description, is to many of some cell continuing to multiply at exponential rates. Thus, flooding an organ and causing a disruption which affects the whole body. With melanoma regular skin exams can usually catch these events before becoming complete disasters. Here is an analogy most people will relate to:

                You use your toilet and flush it before going to bed. AS you lay down you still hear the water running. You enter the bathroom to find the tank just about to spill over and shut of the water just in time. You flush again and wait but it works normally. But for the next month you continue to wait and check before leaving in case it happens again. One morning when running late you do not wait and run off to work. You get home later and find it had been running all day. I was confined to the bathroom for the most part and with a shop vac, towels, a mop, and some sweat equity you manage to get the bathroom back to normal. You inspect the floor and do not find and soft spots. No major damage. Disaster averted. But say you had gone on a month-long vacation. The overfill would have flooded the whole house. Carpet, flooring, drywall, and many possessions ruined. A major disaster needing a major renovation.

                Regular skin checks, prevention, awareness, and vigilance are the key to survival and averting a major disaster. Do not let fear prevent you from saving your own life.

 

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