Patients Invited to join Support Group!

Patients Invited to join Support Group!

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.

I am proud to invite fellow Patients with Uveal (Ocular) Melanoma to join the newly expanded Uveal (Ocular) Melanoma Patient Support Group!


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.

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.

Auburn 4 – get the facts right!

As I posted in a comment to the PEOPLE magazine article last week, I have a new concern about the Auburn group and their fundraising efforts. They posted:

Once it metastasizes 50% will potentially lose the fight within 3 years.” – Auburn OM Page

I was shocked. I am an extremely well-informed and educated Ocular Melanoma patient and since I also have METs, I cling to every story of someone living with this cancer, and have written often about how upsetting the statistics are that without treatment, people with METs live 2-8 months.

So I asked where that statistic came from! I thought it was wrong at the time, but these 4 women have connections with the OM world that I certainly don’t have and I was hoping maybe, just maybe – they had some fresh data or statistics I was not aware of. The result?

I was BANNED and BLOCKED from their Facebook page!

The REAL statistics?

50% of people diagnosed with ocular melanoma will have it metastasize, most often to the liver.

The Auburn 4 supposedly are working with a doctor and their OWN DOCTOR is quoted in the PEOPLE magazine article as saying 96% of the victims of ocular melanoma which has spread to the liver, die within three years.

I questioned the “Auburn 4” women about the claim they are using in their fundraising efforts and in addition to being banned and blocked, my Facebook comment was deleted and at least one of the 4 blocked me personally so that I can’t see any of her Facebook activity.

These “spokesmodels” for our cancer, won’t even take the time to correct the mistakes they make in their own Facebook group.

I can’t guess why they refuse to correct this information.  The actual facts are in the very article about the four of them, so it’s not like the people questioning them are making up their own facts and data!

But this actual statistic makes one thing clear, we need effective treatments and potential cures for everyone, MORE than we need to find out what possible cause(s) for this cancer in Auburn.

The “Auburn 4” repeatedly chant that if they find a cause, we will have a cure within 5 years. They seem to be ignorant of cancer in general. We know multiple causes of lung cancer and still don’t have a cure.  We have multiple causes of breast cancer, and still don’t have a cure. And on and on and on.

We need donations to go to RESEARCH on a CURE far more than we need research on a cause for the Auburn *cluster*. The following are three legitimate non-profit charities in the Ocular Melanoma community who all donate to research which will benefit everyone and not just a “chosen” few!

A Cure In Sight™ (ACIS) https://acureinsight.org

Ocular Melanoma Foundation (OMF) http://www.ocularmelanoma.org/

CURE OM (a project of MRF) https://www.melanoma.org/research-cent…/cure-ocular-melanoma

 

Ocular Melanoma in PEOPLE magazine article!

Another amazing media feature about Ocular Melanoma – this time in PEOPLE magazine! These four ladies from the Auburn “group” have managed to bring their story to the mainstream in such an amazing way! Congrats ladies!

https://people.com/health/auburn-university-alum-eye-cancer/

As this article states, the fundraising efforts of this group is “…focused on finding others from Auburn with the disease and raising money for research into its mysterious connection to the school…

The nationwide exposure, from newspapers to television news and now a story in People magazine, is extraordinary!

But as a patient going on six years into this cancer battle, one quote from the article was particularly upsetting to me. That the research efforts are “starting at square one” according to the doctor interviewed for the article.

“But there are four of us, two of us in treatment, would you expect cancer patients to raise money for their own research? That is ludicrous to suggest but that is what we we are doing, through eyepatchchallenge.org.”

Bad reporting!!  There are not four of them from Auburn, there are over 35 people diagnosed with ocular melanoma that have a connection to Auburn and I am quite sure some of them are also in treatment or participating in clinical trials, and sadly, some of them have died.

I know how that quote made me feel. I can only imagine how I would feel if I was one of the Auburn patients or the family of someone who died from this!

In addition, this is not the first group (not statistically a “cluster” even though most of us in this community think of it as a cluster); there is also another group of 18 cases of ocular melanoma that has been reported in Huntersville, NC since 2014. That was briefly mentioned in the video but not in the website article itself.

And of course, there are the hundreds of thousands of people like me around the world who also have OM. Why did the author never even mention the rest of us?

Also, It’s also not the first time cancer patients have raised money for research. I am pretty sure we’ve all seen the Pink Ribbon campaigns!

The facts is, ocular melanoma patients have been raising money for research into their rare cancer for many, many years. It is really unfortunate the author did not include information about these fundraising and research efforts, too.

I’ve been a virtual “walker” to raise money for the Damon Runyon Cancer Research Foundation through the William Raveis Ride + Walk annual event. 100% of the donations go toward cancer research, and some of that very research led to an immunotherapy drug used to treat ocular melanoma!

[2010 – Development of Yervoy – Led the clinical trials of Yervoy, a life-extending immunotherapy for metastatic melanoma approved by the FDA in 2011.] https://www.damonrunyon.org/our-impact/timeline

This is a one day, annual event which in only three years, raised over $1.5 Million for the foundation. I can only imagine the amount of money which would be raised for Ocular Melanoma Research if our little real estate broker’s annual event got the national attention the Auburn group has received!!

Now, I’m not participating this year but am proud to link to my co-worker Heidi who is! https://www.raveisridewalk.com/index.cfm?fuseaction=donorDrive.participant&participantID=3790

Everyone needs to find the charity which fits with their personal beliefs and interests; whether that is helping other patients with the costs of treatment, or raising awareness, or research.

I’m not sure why the article did not educate the public about the specific non-profit charities which are set up with a Mission devoted to raising money to find a cure for Ocular (aka Uveal) Melanoma; so here are some links to some of those additional OM organizations in case readers would like to make a donation:

A Cure In Sight™ (ACIS) acureinsight.org

Ocular Melanoma Foundation (OMF) http://www.ocularmelanoma.org/

CURE OM (a project of MRF) https://www.melanoma.org/research-center/cure-ocular-melanoma

And of course if you are in CT, you may want to donate to the annual Closer to Free fundraiser to raise money for Smilow Cancer Hospital/Yale Cancer Center, which includes funds going to aid melanoma research! Here is a link to my husbands fundraising page – he’s riding 65 miles to raise money!

https://www.rideclosertofree.org/participant/Paul-Apito

ACIS Patient Brochure

I wanted to bring readers attention to a wonderful Brochure, produced by A Cure In Sight™. I requested printed copies and gave them to my Ocular Oncologist Dr. Lim and she called me to say how wonderful she thought they are!

I’ve uploaded a small letter sized version just for awareness purposes if someone wants to print one at home  (click image below to open)

You may email contact@acureinsight.org or call them at 919-885-5264 if you would like to get professionally printed copies of this great brochure to give to your Ocular Oncologist, too!

Update on MRF Financials

So, progress on transparency! MRF has posted their 2016 tax form 990. We see Net Assets/Balances in the negative; –$1,389,095 for 2016. [2016 MRF 990_2.pdf]

They do go on to explain a change to their fiscal year as well. [financials-annual-reports]

That explains the partial year return for 2015, (April 1, 2015 to Mar 31, 2016) which shows a Net Asset/Balance of -$928,072. [MRF March 2016 990 Public Copy.pdf]

We see Net Assets in the negative for the past two tax returns. I don’t actually understand how a business that does not have goods but only services, is able to operate in the red, nor how a Board of Directors could approve expenses which would leave a non-profit in the red. But hopefully the return for 2017 will be in the positive! But it certainly is disturbing to know that over a million dollars in donations by Melanoma patients, their family and friends, are not going to research or to fulfill any of the MRF Mission, but to dig the charity out of a very deep hole!

So a Comment posted earlier this week mirrors the concerns of many I suspect! I do not agree with the anonymous commenters’ opinion that “Shame on MRF and those who support them!” – those who support them have no reason for shame in this situation!  But MRF does owe the public an explanation for how they are going to proceed with their promise to create, fund and manage the Ocular Melanoma Patient Registry (as well as their other commitments to their donors).

Here are some of my remaining questions about the CURE OM Patient Registry, which I sent in an email reply to the management of MRF a couple weeks ago

  • How much of the original 100K in funding is left?
    (this amount was confirmed earlier in an  email from ljohnston@melanoma.org)
  • How much additional funding earmarked for the Patient Registry has been procured?
  • When will the Patient Registry actually be launched?
  • What plans are in place for multi-year funding and what is the amount needed?