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.

           

 

A short revirew of Clinical Studies

                      
    A clinical trial is a study designed to answer specific questions about biomedical or behavioral treatments, including new drugs or surgical procedures. They are a vital part of medical research and are a key component in advancement in treatments and patient survival. Many preconceptions are still a part of popular culture, like clinical trials are only for when you have exhausted all their options, or you will have to stop a current treatment to enlist in the trial. Some fear that a clinical trial is risky and may harm them. Many think they are just being used as a guinea pig for a virtually untested therapy. I hope to clear up these misconceptions and I will be making the argument as to why clinical trials are something any patient would want to consider participating in.
    Clinical trials are performed because new tools are being created to treat illnesses while old tools can be improved upon. This is especially true with melanoma because the late stages of this cancer is very difficult to survive. A clinical trial does not start without first going through an intense review by ethic committees and agencies. The most recognized for these are probably the Food and Drug Administration (FDA) and the Institutional Review Board (IRB).
When considering a clinical trial the first thing to realize is that the patient is empowered to advocate for themselves and are free to ask questions before, and during the trial. Before starting a trial an informed consent form will need to be signed and should have all the basic information about the trial being offered. There are pros and cons to any trial; pros include access to new treatments before approval, the potential to help future patients, and helping move all research forward; cons can be that trial treatments are not guaranteed to be better than standard, though placebos are rare, there is no guarantee that you will be assigned study treatment. Additionally the treatments are usually only available at a sponsoring institution and treatments may include additional time, visits, and biopsies. These last drawbacks can make the study “Financially Toxic”. That is, the distance and additional treatment time will pull the bread winner away from their job, or it could cost too much to have someone care for the family at home.
    Clinical trials are performed in a series of phases. Before even reaching a first phase and any interaction with a human patient a lot has been done already; such as, lab studies and animal models. A phase 0 study on a limited number of patients is conducted to determine just how the body metabolizes a drug. After this, Phase I, a small number of patients will enter the trial to evaluate safety. Phase II will study a larger sampling of patients to assess the drug’s safety and its effectiveness. Phase III will have the largest number and is the last step before approval. In rare cases a treatment will have such high rate of effectiveness and prove itself in Phase I and will jump to Phase III immediately. 
`The Hippocratic Oath stated “Primum non nocere“– “First, do no harm”. With that as a basis the first primary goal of a clinical trial is to ensure its safety. Meticulous records are kept during the research to facilitate regulatory approval and to approve the use of the therapy for patients outside of the research. So ultimately clinical are not something to fear but to embrace.

Robin Jon Zimmerman

      
    
    
 

RSVP today for our Melanoma Community Research Forum, Jan. 21

SolSurvivors Oregon will be hosting a Melanoma Community Research Forum in collaboration with AIM at Melanoma and the OHSU Department of Dermatology. Join us for a FREE event about melanoma treatment advances, the future direction of clinical trials, and how we're responding to the needs of our community with a patient-centered research project. Plus, there will be plenty of opportunities to join the conversation and find out how you can get more involved!

Melanoma Community Research Forum
Saturday, Jan. 21, 2017
8:30 a.m. to 1 p.m.

LOCATIONS

Portland
Collaborative Life Sciences Building
2730 SW Moody Ave, Portland, OR 97201

Bend
Knight Cancer Institute Regional Outreach Office
963 SW Simpson Ave, Suite 100, Bend, OR 97702

Corvallis
Samaritan Pastega Regional Cancer Center
501 NW Elks Drive, Corvallis, OR 97330

Watch from your computer at home!
Join us for the live streaming of the event starting at 9:00 a.m. PST by clicking here.

 

Event highlights

  • Special guest speaker: Omid Hamid, M.D., Director of the Melanoma Center, The Angeles Clinic and Research Institute
  • Learn how we’re turning patient-identified needs into a research project about self-skin exams
  • Audience Q&A with doctors from OHSU, Providence and more
  • Networking with melanoma survivors and friends
  • Free lunch and parking! 

Hosted by SolSurvivors Oregon and AIM at Melanoma, in collaboration with the OHSU Department of Dermatology.

Questions? Call 916-706-0599 or email info@wearesolsurvivors.org.

Volunteers needed for Melanoma Forum on Jan. 21

Volunteers are needed for the Melanoma Community Research Forum taking place on Saturday, Jan. 21, 2017 at the Collaborative Life Sciences Building in Downtown, Portland.  Volunteer jobs include:

Registration Table 
8:00am - 9:30am
These volunteers will check names off the registration list as attendees arrive, and hand out materials. A volunteer orientation one hour before the event will answer any questions that might come up about the agenda for the day, where refreshments or restrooms are located, etc. 

Welcoming and Directing
8:00am - 3:00pm
These volunteers will help direct participants by placing signs in the building before the event, and greeting attendees at the entrance to the parking lot and the entrance to the building. You will still be able to participate, and will only have tasks before the event begins, and during break times. The event will be held at the new OHSU Collaborative Life Sciences Building on the South Waterfront, and since many people have not yet been to this building is can be very helpful to have a person to point them in the right direction. An orientation will start an hour before the event, to give you time to see the area and be familiar with where to direct participants.

Assistant Event Coordinator
8:00am - 3:30pm
This volunteer will have an integral role assisting OHSU staff with any number of duties including directing and answering questions from participants, setting up catering, setting up signage, or other tasks that may come up. We are looking for someone who is flexible, energetic, willing to jump into any role and able to hit the ground running! More information will be provided at a pre-event meeting in person or by phone to talk about the details. A volunteer orientation will take place before the start of the event.

If you are interested or have questions about any of these positions, please contact Faith Tirrell at tirrell@ohsu.edu or 503-418-9314.

Please pass this information along to anyone who you think may be interested. And don't forget to RSVP for the event!

A patient’s perspective on a patient-centered conference: Recap of #PCORI2016 (Part 2)

By Katie Wilkes, SolSurvivors Oregon
Read Katie's Day 1 recap

Panelists discuss how to recruit participants for patient-centered clinical trials.

Panelists discuss how to recruit participants for patient-centered clinical trials.

Day 2

On day 2 of the Patient-Centered Outcomes Research Institute (PCORI) annual meeting, I was excited to attend the breakout session on planning for successful recruitment in patient-centered clinical trials. As partners in the research process, patients and community organizations can play an important role in recruiting for clinical trials. We might share information about specific trials with our networks, or we can advise researchers on recruitment strategies and patient-friendly informed consent language.

The session kicked off with a presentation by Mary Woolley, head of Research!America. I was thrilled to see her speak in person because aside from being very accomplished, her organization does important work raising public and policymaker awareness about the importance of medical research. Research!America conducts public opinion surveys on clinical trials and has found that although the vast majority of Americans have not participated in a research study, many of them would consider participating if they were asked to do so by someone they trust. Alarmingly, a large percentage of the population believes that you can be enrolled in a clinical trial without your knowledge, which is very much untrue. Let's make people who participate in clinical trials as admired as those who donate blood, Mary Woolley said.

Another presenter during the clinical trials session described his PCORI-funded project that is comparing the effectiveness of antibiotics vs. surgery for appendicitis. Can you imagine being able to avoid surgery if you suddenly came down with appendicitis? This seems completely unheard of. And yet research in Europe suggests that antibiotics could be a viable alternative to surgery for these patients. The project's leader, Dr. David Flum, said this is exactly the type of "big question" that PCORI aims to solve. One that has a real impact on the health and quality of life of large numbers of people.

Conference attendees line up to ask questions at the Friday afternoon plenary panel.

Conference attendees line up to ask questions at the Friday afternoon plenary panel.

Later in the day, the afternoon plenary session highlighted some of the unique work PCORI is funding for people with multiple chronic conditions. Most clinical trials have strict eligibility criteria and this tends to exclude people who suffer from more than one disease or condition. For example, you may not be eligible to participate in a particular cancer clinical trial if you've already been diagnosed with high blood pressure. Designing trials for patients with multiple conditions is not without its challenges, but it's addressing a real need that was eloquently articulated by panelist Anna Renault.

On Friday, I also had a chance to hear from a panel of editors representing a variety of scientific journals including JAMA, The BMJ, and PLOS Medicine. During this session, I was pleased to hear about the innovative ways The BMJ is integrating the patient perspective into its science-focused publication. Of course, PCORI-funded projects are required to think beyond just scientific journals for sharing the results of their work, but it was helpful to learn more about what each of these journals is looking for, and how I might be able to support my research partners on publishing the results of our study in the future.

Day 2 concluded with a "Tweet Up," where I had a chance to meet face-to-face with some of the people I'd been chatting with online throughout days 1 and 2. Never underestimate the power of connecting with fellow conference attendees. You never know what you might learn!

A reminder from one of the presenters that we are part of something really, really big.

A reminder from one of the presenters that we are part of something really, really big.

Day 3

On the final day of the PCORI Annual Meeting, I participated in an all-day workshop called "Getting to know PCORI: From application to closeout." The purpose of this workshop, which PCORI has held in other cities as well, is to help potential applicants get a better understanding of what PCORI is looking for so that they can be better equipped to apply for funding.

The first step toward applying for PCORI funding is submitting a letter of intent. The letter of intent, also known as an LOI, describes a problem you are trying to solve and a high-level overview of how you plan to solve it. If program staff determine your idea fits within the parameters of their program, they'll invite you to submit a full, detailed proposal. Surprisingly, a large number of LOIs do not meet PCORI's minimum criteria. For this reason, it's important to check with a program officer early in your planning process to make sure you're targeting the correct program.

The workshop continued with numerous other practical hints, including the importance of describing why you picked the comparators you did and demonstrating that you can hit the ground running on day one of your contract. Also, don't forget to work with the most up-to-date version of the LOI template on the PCORI website!

Conclusion and takeaways

Many of the major themes and takeaways I wrote about at the 2015 meeting held true at this year's conference as well. This year, though, as our Pipeline to Proposal team gets closer to submitting our LOI in early 2017, things seem to hit a bit closer to home.

Never in a million years did I imagine that I would play such a significant role in developing a melanoma research proposal--from helping choose the topic, to narrowing it down to three specific aims, to developing a robust community engagement strategy. I was inspired by all of the patient co-investigators who presented at the conference this year, and I hope I'll be among them in the future.

After spending almost three years in the Pipeline to Proposals program, I can say with certainty that our team has a significant competitive advantage when it comes to patient-centeredness and patient engagement. Yes, we're still learning, but patients and family members have been integrally involved in the process from start to finish. Will we succeed in obtaining larger-scale PCORI funding? That's for the peer reviewers to decide, but I'm hopeful. At the end of the day, regardless of what happens, I'm thankful to have been part of the process, and I continue to leave every PCORI conference feeling energized and inspired.

Want to learn more about our planned application to PCORI in 2017? Join us at our Melanoma Community Research Forum on Saturday, Jan. 21, 2017 from 8:30 a.m. to 1 p.m. We'll be meeting in Portland, Bend, and Corvallis, Oregon. Learn more.

This post originally appeared on PrettyinPale.org.