Earlier this week, I was thrown out and banned from the Facebook Support Group for Patients with Ocular Melanoma whose cancer has metastasized. I shared all the details with the folks in a support group I started for patients in New England, New York and New Jersey. So I am not going to rehash the nonsense and drama here. Fortunately, I was given really good advice for how to deal with this situation.
NOTE: Requests to join from people whose Facebook Profiles cannot be verified (profile photo, history of posts on their wall, friends, etc) or who do not answer the three questions AND agree to the Rules, will not be approved for membership.
As many people know, for the past few years I have sold various products in order to raise money for charity. I donated gift baskets of products to raffles when I was a sales rep for NYR Organic a few years ago; I donated my profits from the purchase of a certain book about coping with ocular melanoma from customers who used my Amazon Affiliate Link; and as an affiliate of PuraVida I donated the profits from the sale of certain curated selection of jewelry to a number of different fund raisers. A few experiences last year helped me narrow down and focus my fundraising efforts going forward.
In January I joined the health and wellness company Vitalibis as a Brand Ambassador. The Vitalibis products are focused on full-spectrum hemp CBD Oil!
Between now and ride day, September 7th, 2019, I am donating any profits I earn from the purchase* of our Soothing Body Cream to Paul’s Closer to Free Ride fund raising!
Vitalibis Soothing Body Cream is a topical rub which provides a cooling / warming sensation to targeted areas, while leaving your skin feeling moisturized. Includes a proprietary blend of oils, including Vitalibis’ premium full spectrum phytocannabinoid rich hemp oil with approximately 400mg of naturally occurring cannabidiol (CBD) and other cannabinoids per tube. Perfect for massage therapists, sports practitioners, athletes and individuals with active lifestyles.
Let the training begin!
FTC DISCLOSURE: I was not compensated for this post. This website contains affiliate links and I will be compensated if you make a purchase after clicking on one of the links.
I am really looking forward to participating as a Volunteer with the 9th Annual Closer to Free Ride! This will be our second year participating, me as a ride day volunteer at the Yale Bowl and Paul riding to raise donations. This year he will be riding 100 miles! Here is a photo from the finish line last year after finishing 65 miles.
The still frame at the beginning of this video is actually my medical oncologist, Dr Sznol, who also rode as a fundraiser last year! Watch to enjoy some highlights from last year’s event.
Thank you to everyone in advance for their donations to Closer to Free, and thank you to Paul Apito for riding in my honor!
This event Uveal Melanoma Webinar came to my attention today, and I was so impressed with their Patient Guide, I uploaded it to my blog to share with visitors here. It has really excellent for patients who may not know a lot about their disease.
Among the many benefits to being engaged in social media online is the opportunity to learn about new research and non-profit organizations devoted to research! When I was first diagnosed and treated by Dr Carol Shields at Wills Eye Hospital things happened very fast and were quite a blur!
I just learned of a ocular melanoma charity affiliated with Wills Eye Hospital – the Eye Tumor Research Foundation.
CONTRIBUTIONS MADE TO THE FOUNDATION ARE SPECIFICALLY FOR ONE PURPOSE—TO PROVIDE SUPPORT FOR RESEARCH IN THE INVESTIGATION OF EYE CANCERS AND EYE TUMORS
NOTE: The one statistic from their brochure (below) is “Fortunately, most patients do not develop metastatic disease. Overall, 20% of patients develop melanoma metastasis but it may be more or less depending on other factors.”
Every other resource I have seen quotes 50% as the average number who develop melanoma metastasis (aka METs) but that statistic is usually qualified by saying 50% will develop METs within the first five years. This 20% may refer to over their lifetime, and that would be very good information to know!
Make sure to check the charity you are researching at charitynavigator.org to verify their status as a legitimate non-profit charity and to review their most recent tax returns, which often outline where donations have been spent in the past.
PATIENTS ONLY – You must have Uveal Melanoma (aka Ocular Melanoma) to join this group. In addition, your Facebook Profile must have a real name and profile photo which we can confirm is that of a “real person”.
NEW ENGLAND – Patients need to either live in New England or be patients of doctors/hospitals in New England to be a Member of the Uveal Melanoma Support New England Facebook Group
FUNDRAISING – We will allow promotion of Fundraising Events or Activities such as Walks or Runs or the Sale of books or jewelry on Weekends only.
PRIVACY – Please do not share the names of fellow Group Members with anyone and anything posted in the group should stay within the group, with the exception of Public Links to Facebook Pages or other public Web Sites.
PHOTOS | GRAPHICS – Please do not post graphic photos of eyes, surgery, wounds, etc.
To request to join, there are three questions which must be answered:
As most readers here know, ocular melanoma is an aggressive form of eye cancer which spreads outside the eye (metastasizes) in 50% of patients. When that happens, the prognosis is poor and there is currently no “standard of care”.
While participating in Clinical Trials is my last choice, it is often the first option presented to patients.
When I experienced life threatening side effects from systemic immunotherapy, I was forced to start to consider Clinical Trials in addition to undergoing liver directed treatments. The first step was a liver biopsy for the specific purpose of running a complete gene panel and to have a blood test to see whether I am HLA A201 positive or negative.
The reason for this specific blood test, normally conducted to evaluate whether someone is compatable for organ donation, is because there is a Uveal (ocular) Melanoma Clinical Trial which is only for those who are positive for HLA A201.
IMMUNOCORE, a T Cell Receptor (TCR) biotechnology company, is testing IMCgp100, described by the company as a “bi-specific biologic T cell redirection therapy“.
That is how clinical trials work. Something is observed, then tested in a lab setting. Once it appears that there is potential for a therapeutic application with people, it is tested on people for safety and then for efficacy and dosage recommendations. With no standard of care for metastasized uveal melanoma, patients often look at Clinical Trials as treatments.
The first step to finding a Clinical Trial if your Medical/General Oncologist has not already gone over your options, is to visit the US Government database of Clinical Trials located at clinicaltrials.gov or by visiting a third party vetting site like emergingmed.com
This Phase II study is designed to evaluate the safety and efficacy of IMCgp100 compared with Investigator’s Choice but is pretty narrow:
“To evaluate the overall survival of HLA-A*0201 positive adult patients with previously untreated advanced UM receiving IMCgp100 compared to Investigator’s Choice of dacarbazine, ipilimumab, or pembrolizumab.”
I was not eligible to participate in this Clinical Trial for two reasons: my blood test showed I do not have the HLA A201 and I do not meet one of the Eligibility requirements of “No prior systemic therapy in the metastatic or advanced settings”.
So this is a good reminder that patients may want to consider Clinical Trials as their first “treatment” if in consultation with their doctor, their disease is such that they have the time to try a trial first because the order things are done in can make the difference between being eligible in the future or not.
Here is a link to the video, but you do have to be logged into your Facebook account to view it I believe:
I learned so much from the author, Ziva (Anne) Osborn, that I wanted to link to her book, Coping With Ocular Melanoma (OM): A Toolbox, on Amazon**. Anne, as a teen grew up in the shadows of OM when her mother died of OM. Forty years later, she was diagnosed with OM, Class 2.
I have not read the book but it is definitely something on my Recommended list after listing to her speak!
**This post contains affiliate links and I will be compensated if you make a purchase after clicking on my links. I’ll be donating the profits from the sale of this book from my link above or on Facebook to A Cure In Sight during the month of December 2018.