Eye Tumor Research Foundation

Eye Tumor Research Foundation

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!

CLICK TO DOWNLOAD PDF BROCHURE

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.

Uveal Melanoma Support New England

Uveal Melanoma Support New England

Late last week a member of the Ocular (Uveal) Melanoma Support group on Facebook, suggested some new state or regional groups. I offered to create one for New England…and here it is!

Please feel free to share facebook.com/groups/UvealMelanomaSupportNewEngland

The rules are simple:

  • 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:

Navigating Clinical Trials – IMCgp100

Navigating Clinical Trials – IMCgp100

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“.

“Observation of spontaneous antitumoral T cell response in melanoma patients led to the identification of tumor associated antigens” https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2728007/

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.

Learn More about Clinical Trials in general at https://www.melanoma.org/research-center/participate-science/participate-clinical-trials

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

IMCgp100

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.”

When you view a Clinical Trial online, it’s important to view the Eligibility Criteria. Here is a link to the trial of IMCgp100 sponsored by Immunocore Ltd: https://clinicaltrials.gov/ct2/show/NCT03070392

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.B

Book Recommendation: Coping With Ocular Melanoma (OM) – A Toolbox

I just finished watching a Facebook LIVE video from the A Cure In Sight™ Eye Believe Patient Survivorship Seminar, which is taking place right now in Orlando, Florida (Nov. 28 – Dec. 2, 2018).

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!

Click this link to go to Amazon: Coping With Ocular Melanoma – A Toolbox


**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.

Six Year “Cancerversary”

This post is basically an update to my original About Me page and a Six Year “Cancerversary” update on my ocular oncology journey!

My first goal after being released from the hospital back in January, was to attend my daughters April wedding on the beach in Oregon, even if I had to use a wheelchair or a walker!  I made it!  And I actually only needed the wheelchair in the airports, and didn’t even need the cane during the wedding festivities!

My follow up scans showed that the immunotherapy really did not have much of an effect on the tumors in my liver. At this point the decision was made to start Interventional Oncology treatments.

My doctor, Dr. Kim, was recently featured in the Fall-winter 2018 issue of Centerpoint Magazine from Yale New Haven Hospital.

My first treatment was in June, a microwave ablation of the largest “index” tumor.  I ended up not handling being intubated and put under that well, and had to be admitted to Smilow Cancer Hospital until I stopped throwing up and they were able to manage my pain.  Follow up scans basically show a hole in my liver where the tumor had been, and most importantly, no evidence of cancer cells in that area at all.

But I still have 4-5 other small tumors. So the decision was made to try another procedure, immunoembolization.  This process introduces a different kind of immunotherapy drug directly into the liver. Since things are basically only growing slowly or relatively stable, I decided to postpone treatment and in September I celebrated 35 years of marriage to amazing husband, Paul. We spent a week visiting New Mexico and Colorado.  Colorado was made even more special by getting to spend time with our oldest and dearest friends, too!

At the beginning of October I underwent a somewhat abbreviated immunoembolization procedure to the right lobe of my liver. It turns out I do not have arterial blood flow directly to any of the tumors so the embolization part was skipped and I was just treated with the immunotherapy drug. Again, I did not tolerate the procedure that well and ended up admitted overnight for observation and recovery. But after that, I was tired for two weeks but not in any pain.

November 1st will be the six year anniversary of the routine eye exam which started me down this journey. That day I will have a second microwave ablation treatment. Dr. Kim will treat the one tumor in the left lobe of my liver which is somewhat close to my heart. Right before the treatment they’ll scan me again to see the status of the right lobe of my liver. If the immunoembolization has not resulted in tumors shrinking or being eliminated, then he’ll treat the 4 tumors there as well.

I’m grateful my liver is still not impacted at all, through all of this with the exception of when I was in the hospital in January, my blood work has been normal. The CT Scans of my lungs do not indicate any disease process; the nodules noticed earlier are stable and the lymph nodes decreased in size, so there are no continued concerns there right now.

I can’t say I take everything a day at a time but I do try the best I can to live for today, but still plan for tomorrow!

Choose Your Charity Wisely

When you make a charitable contribution, do you always check to see where your donations go? Is helping fellow patients with their medical expenses your interest? Or education? Perhaps you are a fan of the Awareness Campaigns with their many colored ribbons! Or research on the cause of a particular cancer?

My primary interest is research toward a cure for Ocular Melanoma. With this narrow focus, there are a few choices. Here’s some food for thought.

“Since 2012, over $1.4 million has been secured specifically for OM research and 9 different research awards” — MRF’s CURE OM initiative

https://www.melanoma.org/research-center/cure-ocular-melanoma/ocular-melanoma-research

So in seven years, Melanoma Research Foundation has received approximately $32 Million* from 2012-2018, and only contributed $1.4 million Ocular Melanoma research.

[*This figure assumes the organization had gifts, grants and contributions of at least $5 Million in 2017 and in 2018 as they have averaged in the five years prior.]

I was surprised to learn this. I suspect a lot of Ocular Melanoma patients and friends are as well, with all the walks and galas and other six-figure fundraising successes… $1.4 Million seems a little “light” to me.


The Ocular Melanoma Foundation is another charity, but one which is completely focused on Ocular Melanoma as their Mission. Their only grant last tax return was for $25,000 and went to an organization which is not solely OM focused, the American Association for Cancer Research.

Their website says “we are able to put most of this money to work funding research through our $50k a year AACR JIA grant program” but their tax return does not seem to support this figure. However, that may be because they perhaps donate on a calendar year basis, but report their taxes using the accrual basis of accounting.

A search of the AACR website shows there is something called the “AACR-Ocular Melanoma Foundation Fellowship” and one can assume that is where their grant money ends up.

OMF also gave 16 patients financial aid for treatment-related travel and 3 people financial assistance for prosthetics.


Tomorrow on the TV Show Dr. Oz, four self-appointed representatives of the group of patients who have a connection to Auburn University and who also have Ocular Melanoma, will be guests.  These women have had extraordinary success getting themselves on the National News, featured in many markets on Local News, and even had a large feature story in People Magazine.  They have a Facebook Page and also ask for donations at their public appearances and through their website called the eyepatchchallenge.org. They are not themselves operating as a non-profit organization, nor have they affiliated with any ocular melanoma organization or charity. They chose instead to direct those donations to a local organization called The Community Foundation of East Alabama. Their fundraising efforts are to raise money for the research efforts in Auburn, Alabama. They published the following specifics “Dr. John Mason, Ocular Oncologist in Birmingham, Alabama has agreed to lead the research efforts. He outlined a three-arm effort which would require a budget of $135,000. The three arms of research would include genetic or germline testing, geospatial testing, and environmental testing.” The group has not made clear whether all the patients who have a connection to Auburn University (the latest count from them is 47 patients) will be able to obtain this bloodwork, or whether this fundraising is just for the benefit of the four ladies we see in the media.  The environmental testing obviously will all be local, focused totally on Auburn, Alabama.


A Cure In Sight™ for Ocular Melanoma along with a generous financial gift from Jack Odell and John Dagres, are donating research funding of $100,000 to the Harbour Ocular Oncology Laboratory at Bascom Palmer Eye Institute and Sylvester Comprehensive Cancer Center specifically “to investigate a strategy for determining the pathogenicity of “variants of unknown significance” in the GNA11 gene in UM development and metastases.”

My tumor genetic testing showed “Somatic variants detected in the tumor: GNA11 Q209L 34%”. So that specific research project is of special interest to me.

NEW Research Funding to Harbour Ocular Oncology Laboratory

UPDATED – DISCLOSURE: in 2018 I had the opportunity to work for ACIS freshening up the website, publishing articles I personally wrote, and other technical website updates both as an independent contractor and as a volunteer; I also sold some products through my affiliate network and donated the proceeds to ACIS.  The total was unfortunately only about $10.


Starting mid-December and into 2019 – all of my fundraising efforts are going to be for Smilow Cancer Hospital through the Closer to Free Fund rather than to charities focused on ocular melanoma.

Blindness Awareness Month

OCTOBER is Blindness Awareness Month

I am legally blind in one eye – the one with eye cancer. My visual problems are not actually from the ocular melanoma tumor, but from radiation damage as the result of treatment to save my life.

I had no visual symptoms before my diagnosis, my cancer was diagnosed at an eye doctor visit to get a new eyeglass prescription. It is important to get regular, dilated, eye exams because while this cancer happens most often within the population who has fair skin and light eyes, it can happen to anyone.

Blindness is not actually the worst part of this cancer, it is the fact that it spreads in 50% of patients and when it does, without treatment life expectancy is months. With treatment – it can be years. But the longer the tumor is in the eye the longer it has to spread to the bloodstream where it remains dormant.

Mine spread 2 weeks after my 5 year anniversary. I’ve had three treatments so far: immunotherapy (ipi/nivo) which almost killed me; microwave ablation of one tumor which killed that one tumor; and immunoembolization, which I won’t know the outcome until my regular 3 month liver MRI in November. Then I will either do nothing, get microwave ablation of more tumors, or consider a clinical trial.

I share my story on my blog and on Facebook in order to do fundraising and raise awareness of the importance of regular eye exams FOR EVERYONE!


How You Can Help: Donate to YOUR Favorite Charity

Photo Title: Golden and Lab
Two 8-week-old Seeing Eye® puppies pose with a leather Seeing Eye harness that they will one day grow to fit and use to lead someone who is blind or visually impaired.

http://www.seeingeye.org/you-can-help/

 

A Cure In Sight™ for Ocular Melanoma eye cancer patients

https://acureinsight.org/

Fundraising Jewelry Selection

Fundraising Jewelry Selection

My favorite way to fund raise is to as an Affiliate Marketing partner.

I recently announced that I plan to continue raising money for my favorite Ocular Melanoma non-profit charity, A Cure In Sight™ through the sale of a Pura Vida necklace, ring or bracelet displayed below!

I specially curated this selection as the perfect synergy between my efforts to raise awareness about eye cancer and my efforts to raise money for cancer research.

Starting immediately I will donate any commissions* I earn from the purchase using the links below, of this adorable good luck eye charm necklace or “evil eye” ring or the Negu: Never Ever Give Up! bracelet which is one of the Pura Vida Charity Collection bracelets. This means 10% of net profits of this bracelet will be donated to NEGU by Pura Vida, in addition to me contributing my commission to A Cure In Sight!

#NEGU is inspired by 12 yr old Jessie Rees (4/8/99-1/5/12). “Encouraging and supporting kids/families fighting cancer to Never Ever Give Up!

Click the links above or the photos below to go directly to the Pura Vida web page for each item!

The Pura Vida Evil Eye Necklace makes every day your lucky day.

Nix the negative vibes with the PuraVida Evil Eye Ring

10% of net profits of this bracelet will be donated to NEGU by Pura Vida


*I am an affiliate marketing partner with Pura Vida bracelets and jewelry, which means I earn a small commission on the purchase of products made from links directly from my website, myeyeblog.info. This trio of products are the only items which will earn donations for this charity from my commissions.

Pura Vida 30% Off Sale & Free Shipping

It’s Pura Vida Bracelets’ 8th birthday and to celebrate they are offering 30% off site-wide plus Free Shipping starting today, 9/27 through Sunday, 9/30.

And don’t forget, if you purchase using the links on my new fundraising page, I am donating my profits to A Cure In Sight! I’m so proud to fund raise for the only patient founded, patient run, IRS approved non-profit charity focused entirely on interests related to eye cancer – A Cure In Sight™ for Ocular Melanoma.


**This post contains affiliate links and I will be compensated if you make a purchase after clicking on my links.