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!

Do Your Part!

There has been a lot of talk in the Ocular (Uveal) Melanoma Support Group on Facebook that I belong to, about the impact of the disappointing Dr. Oz show about ocular melanoma last week. Yes, the show had misinformation (such as misleading the public about where the patients lived – they did not all live in the same dorm). But the overwhelming consensus I gathered from the discussions is, that even if one person gets an eye exam who might not otherwise get one, then the show was a success.

Every person reading this post, has the opportunity to raise awareness so that one more person might get a dilated eye exam they might otherwise not get, and potentially reach someone who gets an earlier diagnosis than they might otherwise.

You don’t have to be a guest on Dr. Oz to make a difference!

Tips for Raising Awareness

  • Participate in a fund raising walk, run or ride and invite your social network to donate
  • Follow Facebook Pages: LIKE them; Comment on the articles; and SHARE to your profile wall!
  • Share your story! This can be hard for many people both socially, emotionally and technically!
    • You can speak about your experience and encourage dilated eye exams on Facebook
    • You can take it a step further and Blog about your experiences like I do here*!

*This is why I blog here at My Eye Blog.  I do share my story on my Facebook personal profile and I have shared my story when I have participated in fundraising efforts in the past.  But I wanted a place to create links to my favorite websites, and have a place to write about my opinions about topics related to cancer aside from in online Support Groups; but mostly to have a place to generate donations in between the walks and rides and runs!

I have been a blogger since the days of websites which were either white on black, or black on white!  I joined my first online discussion Group back when Oprah first went online with her forum.  My background is computer graphics but these days, if you can write an email, you can Blog!

As a side job, have two websites – at My Do-It-Yourself Web Services I sell domain name registrations and hosting plans; at Eastbury Design I promote my freelance services and have some articles to help my clients learn how they can do it themselves!

Are you interested in Blogging?  I recommend WordPress as the free content management program which means you don’t need to learn any coding or purchase any stand alone software in order to design your website.  Here is a link to an article I wrote on the difference between Pages and Posts, important to understand if you are using WordPress!

What are Pages? What are Posts?

 

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.

Stop Listening to Celebrity “Experts”!

Every day my Facebook account “feeds me” information from Goop or it’s spokesmodel, Gwyneth Paltrow.

It’s exhausting and emotionally draining to realize how many vulnerable people are preyed upon to buy “sunless tan water” or follow diets with cancer cure claims. So today I am recommending this book (based entirely on the excerpts, I have not actually read this book).

…even when she’s right, Gwyneth always manages to mix in a little bit of wrong,” — Timothy Caulfield, author

CLICK THIS LINK to learn more:
Is Gwyneth Paltrow Wrong About Everything


My Eye Blog is a participant in the Amazon Services LLC Associates Program, an affiliate advertising program designed to provide a means for sites to earn advertising fees by advertising and linking to amazon.com.

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.