Thursday, February 16, 2012

The 2012 Melanoma Patient Day at UNC

Yesterday, as I write, was "Melanoma Patient Day" at UNC in Chapel Hill, NC and was sponsored by The Melanoma Research Foundation, the UNC Division of Surgical Oncology, and the UNC Department of Dermatology. Registration was scheduled to begin at 12:30 pm and the presentations began at one. It was scheduled to end at 4:30, which it did run about 35 minutes overtime, but it was worth it! No complaints about that!

I knew I would meet fellow warriors; which I did get a chance to speak to several during the course of the afternoon. I had already planned to meet Black Is The New Pink, Al Estep. He arrived early, as did I, so we had a good chance to talk before the event started. I felt like I already knew him, but it was great to actually get to hug him and have real eyes to look into and a real voice to hear. It's nice to be able to put real faces with what I read online. (And, here's Al's version of the day).

I plan to spend the rest of this blog post telling you what I learned as I learned it. No skipping around. As of right now, there is no video footage of yesterday's presentations to link to. That may be because there will be presentations today for the health and science community and MRF will make them available at the same time. I don't know. MRF is great about putting their stuff online quickly so I'm sure these talks will be up soon and when they are, I'll go back and edit this to add links. Right now you'll have to take my word for what I write and know that there were other people who heard the same things.

This is what the afternoon was slated to look like:
Dr. David Ollila did the "UNC and MRF Welcome and Introduction." He also moderated and kept the afternoon flowing smoothly.

Dr. Antony R. Young, from Kings College London, presented "Sunscreens: Can They Protect Against Skin Cancer?"

Dr. Nancy Thomas presented "Diagnosis of 'Pink' (Amelanotic) Melanoma."

Dr. Keith Amos presented "Why Does My Scar Look Like That? Understanding Surgical Margins for Melanoma."

Dr. Justin Baker presented "The Current Role of Lymph Node Surgery in Melanoma Treatment."

Patricia Long, RN, MSN, FNP presented "High-Profile Melanoma Patients: Underutilized Resource."

Rob Lamme was supposed to present "Protecting Teens from Tanning Beds: An Update about the National and State Policy Debate" but he wasn't there. No explanation of his absence was offered.

Dr. Georgina Long, from Australia, presented "The BRAF Story-From Target to Treatment and Beyond."

Dr. Stergios Moschos presented "Understanding the Biology of Melanoma Brain Metastasis as the Basis for More Rational Treatments."

Debbie and Chris McDonald, with their daughter Samantha, presented "Melanoma: A Parent's Perspective."

And, Dr. David Ollila made the closing remarks.

OK. I got there plenty early and met a woman named Gloria. She was delightful. Anyone who thinks I look young is delightful. But what I want the melanoma community to take away from my meeting Gloria, is she had NO IDEA there is a thriving, growing, supportive community online. That tells me there are plenty of fellow warriors and their families who are going through this alone. As of yesterday, Gloria isn't on Facebook, but she does have email. People with email have access to blogs and online support groups that are not on FB, such as the one at Melanoma Research Foundation.

That also means doctors aren't helping their melanoma patients plug into support groups like they could. In their defense, they probably don't have time to get familiar with what's available. Also, I think we're more of a grassroots effort and our doctors really aren't involved at that level. Help your doctors and fellow warriors and their families out, if you can. This idea may need adapting to fit your own ability and budget, but get together a list of links to your favorite blogs, websites, and Facebook pages where you find support. If you can print out maybe the first page of some of your favorite FB pages so doctors can see the number of friends/fans/followers those pages have and they'll get an idea of the support that's available. If you can, put together a few packets they can hand out or make their own copies of.

When DR. Ollila made his introductory remarks he said that this was the third year of this symposium and the first year they would be in the triple digits of attendees. I'm not sure 100 people were there, but there were plenty and it was great to be in one place with people of all ages, both genders, and all stages. All races were not represented in the audience and that was disappointing to me. We've got to do better with melanoma racial awareness.

The first presentation, by Dr. Young, about sunscreens flew in the face of everything making the rounds on Facebook. Just about everyday there are posts from people reminding folks to wear their sunscreens year round to "prevent skin cancer." Some tell people to use them to "prevent melanoma." Folks, we've got to get this right! And the first place to get it right is in our own minds and understanding. I can't wait for the video of this presentation so you can see it for yourselves. As for now, trust me that this is what Dr. Antony Young said. Others heard it, too. Some info you may already know.

UVB causes the most damage and needs to be protected against. Check the bottle: the better UVA protection, the less UVB protection. There's a trade-off.

Also: let's use an example of a sunscreen with SPF 40. To get that SPF of 40, it has to be applied very thick three times a day...around a 100 gram bottle a DAY (he's from London and they deal in grams) to get the SPF that's on the bottle! Usually he said, we actually get around a SPF of 4...FOUR...because we don't apply the sunscreen as liberally and as often as we need to to get the maximum protection of 40.  Telling people to "use sunscreen" isn't going to help them as much as we think unless we also tell them to apply it properly and liberally and often. One hundred grams of sunscreen a day is a lot of sunscreen! This, though, is a point he made often and drove home. NOTE: 100 grams = 1/5 pound or 3.5 ounces = a little less than 1/2 cup. So use a little over an ounce each of those three daily applications.

He also made the point that people use sunscreen to stay out in the sun longer. Right? And that longer exposure is in conjunction with, usually, not having enough on in the first place! We aren't to use it so we can stay out longer. He also advised wearing dark clothing with a dense weave to protect from the sun and THEN using sunscreen properly, liberally, and often, to protect the exposed parts of our bodies. THAT's the best protection.

Now we need to understand what that actually protects us from when it comes to "skin cancer." This is where you may need to sit down because it's this part that really flies in the face of what I see on Facebook.

I tried to write this down as closely as possible to how Dr. Young said it. If we can protect against sunburn we can protect against squamous cell, but not basal cell, and not necessarily against melanoma. Melanoma is up for debate right now. Most studies show that sunscreen does not prevent against melanoma, but, a recent study in Australia shows sunscreen might prevent melanoma. Of course, that would be some melanomas, not all.

So, this is me talking, even when we don't use sunscreen like we should, there is a little bit of benefit albeit very, very minimal. To get maximum benefit, we need to apply very liberally and often, remember a 100 gram bottle a day per person. When we make posts on FB and advise people at other times, and wear sunscreen ourselves, we need to make sure we tell people correctly or we aren't helping anybody one bit! And we need to be honest about what they are protecting against. They are protecting against squamous cell. While that's great and important, it is certainly not correct to tell people they will be protecting against "skin cancer" or against "melanoma." They will not be protecting against basal cell, and the jury is definitely out if they are protecting at all against melanoma. (I can't wait for the video on this one!)

On to Dr. Thomas and her presentation of diagnosing amelanotic, or pink, melanoma. This was great and I truly learned things I had no clue about. "Amelanotic" melanomas don't have pigment and are often the ones that are "nothing" until it's too late. Two - eight percent of all melanomas are amelanotic and are hard to diagnose. This will be a must see video! Until then, if you have a pink or clear nodule or mass, on your skin or under it, get it removed and pathed! Especially if it bugs you, causes you concern, you have a funny feeling about, has an irregular border, or is changing...these tend to spread out before going inward.

Dr. Amos' presentation about our scars and Dr. Baker's presentation about lymph node surgery are too "medical" for me to give a synopsis. They were very informative, but they were nothing I need to "alert" you too until the videos are released.

There was nothing to alert you about from Patricia Long's presentation about high-profile melanoma people, either. But did you know Cybil Shepherd, Troy Aikman, and Arnold Schwarzenegger have had melanomas removed? I knew Sam Donaldson is a stage 3 survivor.

Moving on to Dr. Long and her presentation about BRAF! All I can say still is, "Wow!" She got into the genetics, which grabbed my attention! I have thought since I was a teenager that the answer to cancer lies in our genes. When I went to Meredith College, I was going to major in Biology, branch off into "genetics" in grad school and then go into cancer research and find the cure. This lady is living my young dream! My one beef with her is she used the "cure" word. Other than that, she explained, in layman's terms, BRAF, the history of how research has gotten here, the medicines that have been developed, the various mechanisms of resistance, clinical trials that are exciting, and she got into developing research around not only BRAF but MEK and a combination! This year they will be starting stage 3 trials aimed at preventing stage 4! Those trials will revolve around a combination of BRAF and MEK inhibitors.

What to take away, for now, since I don't have a video to share: to find melanoma trials that are going on worldwide go to clinicaltrials.gov and search for "melanoma."

Dr. Moschos was, also, a bit too medical for me. But, as someone with that stat of mine coming back in my brain, I listened with interest. Melanoma is the third most frequent cancer that goes to the brain.

The afternoon ended with the McDonald family. Samantha was ten years old in 2010 when she was diagnosed with melanoma. Hers presented in her inner thigh and for the longest time the doctor said it was nothing. It was so ugly that when it was finally removed, a plastic surgeon removed it and had it pathed. He got her in the hands of the team at UNC where her lymph nodes in her groin area were removed and her parents opted for her to have Interferon for a month. Right now this beautiful young girl is doing well. She seemed to be doing better than her parents, especially her dad! I can't blame him, I'm sure I wouldn't be able to talk in public about my child having melanoma either.

So, folks, I hope all of this shows the continued need to support melanoma research efforts as best as we can and as often as we can. I hope I've underscored the need to let our fellow warriors know we're here for them and they don't have to go through this alone! I hope I've shown the need to be accurate in our Facebook posts about sunscreen and to practice safe sun in our own lives.

I'd like to leave you with further, up-to-date reading about cancer research.

This link also has a link to a 60 page booklet in pdf, "Cancer|Changing the Conversation: The Nation's Investment in Cancer Research-2012". Melanoma has several pages devoted to it.

Here you will find facts and figures as they pertain to cancer research funding by the National Cancer Institute. At the bottom of that page you'll find a most interesting table. Melanoma is 6th on the list as far as being a prevalent cancer type, yet we receive less funding than the seventh! You'll also notice that there are more cases of lung cancer diagnosed than any other cancer, for now, and yet lung cancer receives less funding than numbers two and three, prostate and breast respectively. No one mentions, or takes into account, that melanoma is on target to being the most prevalent and deadly cancer of ALL cancers by 2022...ten years from now.

Our research funding needs to match that fact and it doesn't.

God is working on our behalf. And I am truly grateful. He's opening doors and the prospects are exciting. There are research teams around the world going through those doors and that's exciting.

Those doors are expensive doors to open and keep open.

Maybe at next year's Melanoma Patient Day there will be reports of astounding growth in research dollars.

I sure would be grateful if that's the case!