Melanoma Blogger Summit… the Nitty Gritty

The beautiful GlaxoSmithKline building and people

Bloggers and GSK Staff at GSK Philadephia Headquarters

There has been interest expressed in some of the more specific information given at the GlaxoSmithKline Melanoma Blogger Summit. I will be the first to tell you, I have a horrible memory. I also missed much of a key component of the genetic testing portion of the presentation. This was the part I was most looking forward to, but I may have needed to run to the bathroom desperately at that moment and I may have gotten a little lost on the way there. The GSK employee who told me to turn right, then right again… well, he was NOT right.

SO, no guarantees that I will have the most eloquent synopsis nor the greatest grasp of what was presented, but with a little prayer and the notes GSK provided, I will do my best to pass on what we were told!

First, that this was more of a discussion format than a formal presentation of information about up and coming advances in the melanoma world. GSK genuinely wanted to hear from patients.

At one point in the discussion, they actually mentioned a clinical trial I failed out of back in 2010 (DERMA MAGE3) I got to look at one of their research leads and thank him in person for the rare opportunity to be in a trial as a stage 3 melanoma patient. That may have been the most poignant moment of the day for me, outside of meeting a few of my online support group friends “in real life.”

The bloggers

You can find info for the people who were involved in this meeting listed below in a PDF list and live links. Please note that Donna’s link within the PDF is incorrect. You can find her writing here!

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GSK Employee Presentations

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Jamey Millar, Vice President, U.S. Oncology, GSK

Dr. Faisal Mehmud, Head, U.S. Oncology Medical Affairs,

GSK

Mr. Miller  and Dr. Mehmud began the meeting by giving us an overview of GSK and sharing with us their committment to oncology and patients.

There was recently an asset swap of GSK’s current oncology drugs  with Novartis.  Tafinlar and Mekinist are the drugs that primarily affect the melanoma community involved in this trade. GSK committed to continuing their early stage and global research in melanoma. This trade was done to strengthen GSK as a leader in vaccine manufacture and Novartis in oncology drugs.

Dr. Miller also shared a committment made by GSK to serve patients.

The Oncology Pledge

I am PROUD TO JOIN your battle for CANCER SURVIVAL
I am COMMITTED to offering solutions that make a DIFFERENCE in your life
I am PASSIONATE about providing you EDUCATION ACCESS to our innovative medicines
I am FOCUSED on INSPIRING HOPE and ENABLING the GIFT OF TIME
I am a TRUSTED PARTNER in your COURAGEOUS FIGHT against cancer
I am GSK Oncology

Dr. Diane McDowell, U.S. Oncology Medical Affairs Lead, GSK

Dr. McDowell gave a brief talk about genetic testing of melanoma tumors. Unfortunately, this is when I needed to wild-goose-chase the ladies’ room. Once I returned, one point of discussion stuck out to me.  Research seems to show that the genetics of melanoma stay the same in an individual regardless of stage or recurrence. This brings to light the question, when should testing be done for genetic mutations, specifically the BRAF gene?

In my humble opinion, it seemed to be strongly hinted that this testing should be done at diagnosis to open the most options for treatment for a patient. BUT, this may have been my bias as I listened to the discussion. My own story is that while I toed the line between stage 3 and 4 for almost a year, my nurse practitioner worked to have my tumor BRAF tested, which then could take three months. Because of her diligence (along with my oncologist) when I did move firmly into Stage 4, I knew my tumor was BRAF positive and had Zelboraf in my arsenal.

[gview file=”https://marthabishop.files.wordpress.com/2014/05/2014-gsk-melanoma-summit-genetic-testing-backgrounder.pdf”%5D

Other resources

GSK also provided us with this infographic they have found helpful in sharing about melanoma. Please feel free to use this in your own education of others!

[gview file=”https://marthabishop.files.wordpress.com/2014/05/2014-gsk-melanoma-summit-metastatic-melanoma-infographic.pdf”%5D

Blogger Panel Discussion

After these short presentations, the rest of our meeting time was spent in discussion. Much of it was GSK asking the bloggers what they feel is helpful in educating others. How can GSK help the melanoma community? Why did we start blogging? The non-profit reps also spoke up at this point and discussed what campaigns they find helpful and valuable to spend their limited financial resources on.

The most interesting part of this panel discussion for me was comparing notes about our audience about bloggers. Most of us want to share our experience of treatments and educate about prevention of melanoma. I was unique in the group in wanting to reach parents of young children with sun safety for children. Another blogger targets teens and young adults. Another strives to offer hope in treatment for other patients and caregivers. We had a blogger whose audience is white men over 50 and another who blogs about life in NYC dealing with a career and melanoma.

It was asked if GSK experts saw any future for trials for stage 3 patients. This was when the MAGE 3 vaccine trial I participated in was brought up. My impression is that it “failed” as a treatment in this trial, but they are still looking at patient biomarkers which may predict or resurrect its success in the future.

There was also mentioned the hope of combination therapies in the future, but with GSK getting out of the current oncology market, this was not delved into very deeply.

I hope this is helpful to those of you curious about the content of this conference/meeting/summit/gathering. If anything, please feel free to download and pass on any of the PDF resources. Any of my writing, I would ask you attribute to me, unless it is incorrect, then feel free to claim it as your own. 😉

To borrow my mentor’s words…

HOPE always hope!

*GSK reimbursed my travel and expenses to attend the GSK Melanoma Summit, however, I was not asked to promote GSK or its medicines.
This post is voluntary, represents my own views and I was not paid to write it.

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