MRF Blog

In Isolation

September 9, 2011 | Categories: Types of Melanoma

I have been thinking lately about how melanoma can isolate people. 

Any life changing event does this to some degree.  Have a baby, win the lottery, lose a job, lose a parent.  It all can isolate. Even though we seldom walk these paths alone, we are, nevertheless, irrevocably changed by the journey, and changed in ways that make us different from people around us.

But melanoma is particularly nasty about this.  This is a nasty, pernicious disease that is relentless in coming back and evading treatments.  But melanoma patients often hear this:  “Oh, melanoma. That’s just skin cancer, right?  They cut it out and you are fine.”

Even the treatments make melanoma patients different.  Chemotherapy has limited impact on this cancer, so some of the classic signs of cancer treatment bypass melanoma patients.  They don’t lose their hair, look pale, walk the hospital halls with IV bag in tow.  It is not unusual for melanoma patients to look perfectly healthy.  Sometimes the appearance matches reality.  I have known Stage IV patients who felt fine, even as they moved closer to succumbing to their disease.  Sometimes the side effects of treatment are less apparent.  Living with flu like symptoms for a year is a horrible experience, but is not something that is readily apparent.

I suppose my thinking of isolation has been sparked by recent conversations about ocular melanoma, or melanoma of the eye.  This is a rare subset of melanoma—only about 2500 cases in the United States a year.  But it is a devastating disease that is universally fatal once metastasis has occurred. Imagine being part of a small subset of an often overlooked disease.  Imagine being the only person you have ever known or even heard about to face this life-threatening illness. 

Seems to me that finding a way to attack the isolation may be as important as finding a way to attack the disease.  “You are not alone” is a line that offers much comfort, but only if it is true.

One of the reasons isolation has been on my mind is this.    In a few days I am proposing to our board of directors that we launch a new initiative for patients who have melanoma of the eye.  This is a very rare form of melanoma, affecting about 2500 people every year.  The program will help build collaboration among researchers, with the aim of accelerating progress toward better treatments.  It will create an online space and some print material through which patients can learn about this cancer and find ways to cover the cost of transportation to one of the very few treatment centers with expertise in melanoma of the eye. 

But it will also create a framework for community.  A place where patients can interact with other patients.  Can share stories, frustrations, successes.  If we can demonstrate that the promise “You are not alone” is real and tangible, then we will have taken another step toward being true to our mission.

Comments

- (9/9/2011 - 1:51pm)

You have hit the nail on the head so to speak! Sadly, I lost my husband to ocular melanoma last February. Up until a few months before he looked great. Most people didn't realize just how sick he was, to be even truthful neither did he. It is a small group of people that have ocular melanoma, it usually is a death sentence and there is definetly a need to find support for patients and their families. I scrambled to find any useful information. Now I spend a ton of time telling people all about melanoma and ocular melanoma to really help improve their awareness!
 At first I complained silently to myself over my two hour ride each way to take my husband to Philadelphia for treatment until I went the first day and saw people from Japan and Australia, Ohio and many other places, THEN I was thankful that we lived so CLOSE!!! How quickly one's perspective can change!
Please include me in any information that you can supply!
My name is Christine Gabriel PO Box 1202 Island Heights, NJ 08732 and why you are passing on information the doctors at Will's Eye Hospital are the best!

 

- (9/10/2011 - 11:29am)

How can we help support this initiative for ocular melanoma?

- (9/10/2011 - 2:59pm)

Amen. Amen. Amen... oh, and thank you!

Sarah Elizabeth

(An OM patient with Liver Mets)

 

[Love X Infinity]2
 
DX 7 April 2006 ~ CM, 15 mm 
TX 15 May 2006, Radioactive Plaque 
DX 11 February 2010 ~ Liver mets
TX 8 March 2010, Resection
Currently NED

- (9/11/2011 - 10:08am)

My husband is also a part of that very small, often overlooked OM community... Great idea...

June

Jz88keys@optonline.net

Husband DX October 2007

Eye enucleated November 2007

Thankfully NED!!!

Anne Marie - (9/11/2011 - 11:46am)

Thank you.  I have been an OM patient for 5 years now and  thankfully, to date, this disease has not metastacized.  I have lost the vision in my treated eye, but that's a small price to pay for my life.

It's nice to "see" an organization, as large as MRF, begin to bring to the forefront this orphan disease.  Hopefully, this will be the beginning of an end to this dreaded disease.

Thank you again.

Anne Marie

- (9/11/2011 - 1:25pm)

I urge the MRF to dedicate some of its resources to furthering research on Ocular Melanoma.  This is a much needed area for a type of Melanoma that has long been in obscurity, and for which there are many fewer resources than the more prevalent Cutaneous Melanoma.  It is terminal once it has metastasized from the eye, usually to the liver.  We who have this disease often, even usually, have to piggy-back on research done for Cutaneous, and which usually doesn't work with Ocular.  This is the reason that many clinical trials for Melanoma exclude those with Ocular.

Thus, for those of us whose cancer has metastasized, life is a constant search for any reasonable treatment that just might apply, just might be available, much less be effective with Ocular.

I am fortunate to still be alive 8 1/2 years after having been diagnosed with Ocular Melanoma metastasized to the liver, i.e., stage 4 with a 6 months prognosis.  I have gone from trial to trial, treatment to treatment, doctor to doctor; trying to ferret out reasonable treatments from the maze of experimental research mostly dedicated to Cutaneous.  My cancer is usually slowed for a while, then begins its march again.

MRF, please, please focus some of your resources on Ocular Melanoma.

Esther Damaser

- (9/11/2011 - 11:25pm)

For an organization like the MRF to begin a focus on OM is terrific news.  We will watch what evolves and hope to become engaged as the efforts develop.  many thanks

RobC - (9/12/2011 - 6:34am)

Thanks MRF,  it really is fantastic and exciting news that the MRF is going to launch an OM- specific initiative. You are completely right that the isolation and lack of general knowledge about the disease are twin problems that make things doubly harder for OM patients, families and caregivers.

This seems to have led to a number of fragmented, short-lived initiatives that have been unable to leverage the support of each other and pool resources or knowledge

An initiative with the support, resources, expertise and commitment of the MRF could make huge steps in bringing the disparate OM communities together - patients, physicians and researchers - and drive forward improvement in our understanding and treatment of patients.

I would love to help in any way and look forward to more developments. Many thanks again.

lak - (9/12/2011 - 6:46am)

I am a UK pateint with ocular melanoma - the universal healthcare system in the UK excludes treatment for ocular melanoma outside to the eye. I have lived 2 1/2 years stage 4 (6 month prognosis) because I had a medical education, knew how the NHS(National Health Service ) worked and fought like mad to get proven treatments to prolong my life.

Even I fail sometimes, the latest treatment - for widespread 17+ liver lesions(3-6 mths life expectancy) treated with SIRT has been refused NHS funding, althuogh the committee  felt that it was an appropiate treatment and one I should have refunding of the drug treatments £20000 approx could not be done as the application procedure had not been correctly followed. Despite my having asked for the regulations and never recieving them. At the point all my energies were focussed on getting life prolonging treamtents not on finding hundred page documents that detail which form has to be filled in in which order. 

I am sad that the healthcare system i have dedicated my lifes work to has excluded me when I needed it. However I am happy to report that SIRT has been successful 6 mths on when i should be dead or dying I have just returned from my daily 8 mile run! I have however a sense of guilt that I have prolonged my life because of my education and wealth where as young OM patients in the UK are denined such treatments.

The NHS treats ocular melanoma patients in a cruel and unusual way in that many are never told that they have a life threatening illness. They are not fully informed. They are not given scans that may detect metastatic disease at a stage when life prolonging treatments may be of use. This is so important for those patients with young families. But unlike the more common cancers ocular melanoma patients are not informed fully of thier diagnosis, or of state support benefits they are entitiled. Cutaneous melanoma patients are treated according to strict time targets- 4 weeks from diagnosis to definitive treatment of the primary. It is not unusual for ocular melanoma patients in some centres  to wait 2-3 months for treatment of thier primary tumour.

It would be wonderful if MRF could forge links with the uK patients group and help promote a more equitable health care in the UK and promote futher resarch.  A large organisation like MRF may well be able to raise the standards  of expectation worldwide.

Many thanks for this iniative.

 

Lesley

- (9/12/2011 - 12:12pm)

Thank you MRF for bringing attention to OM. I am a 10 yr. survivor. Like others, I have researched and participated in many trials. Right now it appears there is nothing else out there for me. Please, MRF  focus some of your resources on ocular melanoma.

Thank you,

Nancy Dowding

 

Dx- Oct. 2001

Tx- Enucleation

Tx- 3 yrs. GM-CSF

Dx- May 2009, liver met

Tx- June 2009, laparoscopy w/ wedge resection, found peritoneal and omental mets

Tx- Aug. 2009-Oct. 2009, Carboplatin, Avastin and Abraxane

Tx- Nov. 2009-Feb. 2010, Temodar & Gleevec

Tx-  Mar. 2010, liver resection, removal of omentum & peritoneal mets

Tx- May 2010-Sept. 2010, MEK Trial

Tx- Oct. 2010-Dec. 2010, Ipilimumab (Yervoy)

Currently stable

- (9/21/2011 - 6:03pm)

hi...after having his eye removed in Feb 2006 (largest eye tumor ever seen at the OSU James cancer center in Columbus, OH), my husband was cancer free until last month. Made it over 5 years.  He has small, thin tumors in his lungs.  We are considering Sutent and Ipilimumab.  What was your experience with the Ipilimumab?  What about the MEK trial.  That was suggested by our doctor as a 3rd choice. Thanks.

Dennis - (9/12/2011 - 2:17pm)

Thank you to the MRF. I truly hope that you devote your resources to research, awareness and treatment of OM. After being diagnosed and treated in 2010 I learned quickly how deadly this form of cancer can be and how few resources are available for any of us if our tumors metastasize. It is quite apparent that the majority of doctors treating OM do not realize that stage IV patients can live for quite a long while if they are being imaged and monitored with MRI's at 3-6mth intervals and get appropriate treatment options in time. I shudder when I think of the many patients who are never informed that there is a 50% chance that this can kill them, and often quickly.

It seems that many doctors believe that once you have mets from OM you are a lost cause and it's not worth pursuing any treatment plans. This perception needs to be changed. I hope that the MRF can help us with this.

Thank you for your efforts!

Dennis

- (9/12/2011 - 11:10pm)

I join with the others that have made their comments here on the subject of Ocular Melanoma (OM).  It is my sincere hope that MRF will lend its voice to improving the lives of those of us that fight OM.

It is hard to deal with the daily perception of those living around me that I "look so good" or that because the doctors have treated the melanoma in your eye - "everything is great."  I also find that other individuals that lack knowledge about OM, do not want to learn about or talk about this cancer. they hear the word cancer and are gone - almost as if they might catch OM.

I pray that MRF will be a leader in advancing the medical communities' knowledge and research into Ocular Melanoma.

butchewing - (9/16/2011 - 5:36pm)

Yes! Let's get the word out! 

http://helpbutch.com

- (10/4/2011 - 4:37pm)

I can only second and third all the words of previous OMers that have posted after this article. I am extremely grateful as a young OM survivor, currently NED, that the MRF is launching an OM specific branch. It is desperately needed. Hardly any progress has been made in decades on our rare disease, and though there are only 2500 new patients a year we all deserve a fair chance in at least fighting this disease with adequate support from doctors and research teams alike.

Thank you MRF.

I am so encouraged that MRF is taking up the ocular melanoma cause.  My husband had ocular melanoma and plaqued in April '06.  It metastisized in Dec. '10 .  To date he's had ablation, resection, yervoy +gmcsf trial, and presently y-90.  Hopefully he will go into a long remission with this y-90.  Please keep pushing for new and innovative treatments for this beast of a cancer..Thanks, Margaret and Butch Rogers

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