Case Presentation about Me!

Case Presentation about Me!

Every few months I search for information about the adverse reaction I had from immunotherapy treatment. I knew my case would be written up at some point because at the time it was so rare.

I just found it in the European Journal of Rheumatology!

This is a photo my husband took while 14 doctors and medical students observed the examination process needed to diagnose myasthenia gravis.

— Sutaria R, Patel P, Danve A.
Autoimmune myositis and myasthenia gravis resulting from a combination therapy with nivolumab and ipilimumab for metastatic melanoma. Eur J Rheumatol 2019; 10.5152/eurjrheum.2019.18159.



CBD for Closer to Free

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.

I am proud to plan to volunteer at the Closer to Free Ride in person at the Yale Bowl in September. And between now and then I am also working to raise funds for my husband Paul, who is riding 100 Miles to raise $1,000 in my honor, to benefit Smilow Cancer Hospital and Yale Cancer Center.

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.

*Eligible purchases must be made from my website

Another Year Closer To Free

Another Year Closer To Free

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!


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.


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 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.

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”

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

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 or by visiting a third party vetting site like


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:

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.


As you choose where your charitable donations go I’m sharing a post I made earlier this year:

Everyone has something that speaks to them – pets, the environment, a disease like cancer that effects them or someone they love. The most important thing is to give. There are some opportunites through Facebook and PayPal where the non-profit organization can earn matching funds, so it might be a good idea to visit the Facebook Page for the charity of your choice before you donate. #GivingTuesday

One Step Closer to Free

As long as I’m alive I’ll participate in the Closer to Free event as a fund raiser or volunteer or maybe even some day as a rider.

I got discharged yesterday, after being in the hospital since Thursday. I just had my second microwave ablation of the ocular melanoma which spread to my liver. It was my six year diagnosis anniversary on Friday.

Thank you to everyone at Closer to Free Ride and Smilow Cancer Hospital and Yale New Haven Hospital for fighting this battle with me! The still frame at the beginning of this video is actually my doctor, Dr Sznol, who also rode in the ride. It is amazing and uplifting to see your actual doctor participating! Thank you to Paul Apito for riding and thanks to the friends and family for their generous donations! #closertofree

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

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 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.