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christianreina's picture
Replies 7
Last reply 10/9/2012 - 3:59pm

Good evening,


There is no doubt in my mind that the first time someone is told there is something wrong with their health, fear and axiety controls every thought. For me, September 27, 2012 was that day... My wife, 34 years of age, was told to see a retina specialist who completed a test and told us there is a "large" tumor behind her left eye. Just like that, my entire life has changed. She has been very positive and I have been full of emotions. I keep thinking about what will happen, and most important, our life without her.

I apologize to her many times that day for feeling so down, depressed, and disoriented. I would die without her. We were told to see Dr. Carol Shields at the Will's Eye Institute in Philadelphia to get additional details. I was so scared because I didn't know what to expect. I kept thinking how unfair this is, but in the end this can happen to anyone.

I'm sorry for starting my introduction with doubt, fear, and lack of fortitude, but typing how I felt and hoping someone has some guidance on how to deal with my axiety and fear will be tremendous.  Oh God, I just love her so much. Before going to see Dr. Shields, I was reading about this for days.  I was only hoping for the best and tried to maintain a positive attitude for her.


RESULTS 10/08/12

I went with my mother-in-law, my mom, and my wife to Wills Eye Institute today.  After spending the entire day there, we found out the following:
Diameter: 21mm
Thickness: 13mm
Ciliary Body: Yes
Quadrant: Superior
Of course, this is not what we were hoping to hear. She is scheduled for surgery next Thursday to have her eye removed.  I'm fully aware the significant thickness, diameter, and ciliary body involvement are definetely risk factors.  With that said, I need help with the following:
 1.FNAB vs. DecisionDx-UM: The Wills Eye Institute offers the fine needle aspiration biopsy to check for monosomy 3; however, the DecisionDx-UM  seems to be more accurate. Also, the FNAB takes 3-4 months to get the results.  Can anyone recommend which options is better?  We truly want to know even though the size and ciliary involvement do not improve the results we would love to see.  If we decide to do DecisionDX, would we be ruling any crinical trials Dr. Sato may have in the near future since he is the oncologist and reviews the FNAB with the patient?

 2.Scan to check for Cancer: Since she is schedule for next week, we were told to get a MRI, chest scan to rule out the cancer spreading somewhere else. She had her blood work done which came up without any issues, but I know that does not rule out something found during a scan.  We live in central New Jersey and the Wills Eye Institute recommended Dr. Sato; however, his earliest available time is January 2013. There is no way we are waiting that long.  Do you recommend anyone in the tri-state area? 

 3.Tell the children:  We have a 6yr old very smart girl.  We are debating what to tell her. She already knows mommy has something behind her eye and the doctor needs to take a look at it. What are your suggestion?

 4.Statistics:  I'm a numbers guy. I'm profession is risk management and I rely on facts and objectivity most of the time; however, everything in life is not always black or white.  Has anyone know or have any statistics of patients with thickness > 10mm and Ciliary Body involvement that resulted in disonomy 3 or Class 1?  The Wills Eye Institute gave me a copy of the "Prognosis of Uveal Melanoma in 500 Cases Using Genetic Testing of Fine-Needle Aspiration Biopsy Specimens"  In this report from 2011, there is not a single patient with thickness over 12.1mm and size over 20mm.  However, the "Collaborative Ocular Oncology Group Report Number 1: Prospective Validation of a Multi-Gene Prognostic Assay in Uveal
report from earlier this year shows some patients with thickness/diameter and ciliary body listed in Class 1 where the range covers the size discovered in my wife.   What are your thoughts or suggestions about this?
I appreciate any feedback. This is a very difficult time.  Thank you very much for your support.

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Oakdene_Cottage's picture
Replies 1
Last reply 10/6/2012 - 4:34pm
Replies by: eyecancerny

Does anyone know of a PD-1 trial that doesn't require a previous "fail" response to Yervoy/Ipi? There are a few in the works, but they aren't recruiting yet, and I can't wait. If I don't find something in the next few days, I'm going to move forward with ipi.

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Molly- CURE OM's picture
Replies 3
Last reply 10/6/2012 - 4:32pm

Good morning everyone!!!

This past weekend I was fortunate enough to take part in the MRF phone buddy training program.  Let me tell you, it is a wonderful program!!!  For those that don't know what a phone buddy is, a person that contacts the MRF can request to have a buddy.  The buddy is someone who will listen to what you have to say.  A non-judgemental person that will listen.  You can tell your buddy things that you may not know how to say to friends/family and the buddy will listen.  

Often times patients have a hard time communicaiting things when they are first diagnosed.  They can have a hard time expressing to their cargegivers how they feel about things and even have a hard time simply staiting "I am scared."   You can bounce ideas off of your buddy that has "been there, done that" and the buddy can give you ideas on how to state what you are feeling.  They buddy can also help formulate a list of questions to ask your physicians, point you in the direction of resources for clinical trials, and simply listen.  

If you, or anybody you know, could benefit from having a phone buddy, contact Mary Mendoza at the MRF either by phone or email.  I will include the links for her contact infor below.  

Have a great day!

Molly Stoffa


Mary Mendoza can be reached at 1-800-673-1290  or

The battle was lost, but the war must go on until a cure is found.

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Dottie Gutenkauf's picture
Replies 6
Last reply 10/6/2012 - 4:29pm

I don't know how to do this, so bear with me!  I apparently registered on this list last year and want to update not only my profile but my treatment history.  Can somebody email me & tell me what to do?  (I appreciate all the help so far in navigating this but I'm a 78 year old amateur and need coaching.)  Now that I've had the sense to bookmark the site I imagine I'll be able to get back more often (smile). 

My OM diagnosis was in November 2008; successful plaque brachytherapy January 2009 at Sloan in NYC; tumor has shrunk (dead, Dr. Marr says).  Mets in my liver (2, plus pepper flakes) dx Sloan December 2011; 4 infusionf of Yervoy December 2011 through May 2012; tumors have shrunk & pepper flakes gone as of June 2012; tumors stable as of August 2012.  Next visit November.

Found OCU-MEL list early this year and have gotten so much out of it (thanks to all)!.  Attended both conferences (DC & Philly), met some wonderful people, learned a lot, now educating my medical professionals & others in NJ about OM (and boy, do they need it!) health professionals everywhere, when they hear "melanoma" they think skin. 

I've posted something about OM on my blog (DottieGSez) at and am talking to reporters and community members about OM.  But you know, I don't want to spend what remains of my life living inside my disease.

I appreciate everything you folks say & do...I don't know where I'd be without you!  Let's hope I remember how to log on next time....

"Do what you can, with what you have, where you are." (Teddy Roosevelt)

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ThatHomeschoolDad's picture
Replies 4
Last reply 10/5/2012 - 11:58am

So there was a big dustup today over on the ocumel list, which brings up the question:  How do newbies find their way to that list and how can this list be positioned to capture the same audience?   I think I found ocumel via the Choroidal_Melanoma yahoo group, so we can certainly spread the word there.  Having started in the Yahoo group and then moving to ocumel once I went Stage IV, I've tended to assume that was a normal progression.  I just never read that many yahoo posts from metastatic survivors.

There must be other sources.  Renee at Jefferson knows about this site, since she was at the conference, and we did, afterall, giver her a well-deserved standing O.   I know she used to steer new patients toward ocumel, and no doubt there are other health practitioners doing the same out of habit.  So how do we spread the word to them?

**CLINK CLINK**  (tapping on the glass)  Note to Dr. Sarah!  Do you guys have web tracking data to show from where new users come to this site?  Does MRF have banner ads anywhere with tracking data?

I still think the posting process here is way to slow, but it's smelling more and more like revolt over at ocumel -- you know, that faint hint of gunpowder, tears and bad cheese.   The time is ripe to shuttle more members this way.  Now if you'd all join me in a chorus from Les Miserables...

No one?


Keep Rowing!

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Oakdene_Cottage's picture
Replies 6
Last reply 10/4/2012 - 5:18pm

For those of you who have had Yervoy/Ipi... what was your dose and how did you tolerate it? 

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So I am pretty sure that I am going to be starting Yervoy at UVA next week.  Before that, I wanted to make sure that I researched all the PD-1 trails I could find.  It doesn't look like there are many out there.  I'm not eligible for the Moffitt study (have to fail ipi first).  The others are not recruiting.  Study #1, #5, and #6 are possibilities, but they are Phase 1, and that is concerning to me. 
Right now my doc wants to do Yervoy.  If I don't respond, then we can try for the Moffitt study.  I'd love some feedback if you have any.  
Question:  Is Yervoy considered to be an anti-Programmed death-1 (PD-1), anti-PD-L1, anti-PDL-2, or anti-Cytotoxic t-lymphocyte antigen-4 (CTLA-4) antibody type therapy?  Will taking ipi cause me to become ineligible for studies 3 & 4? 
Here is what I found: 
1. A Phase 1b, Open-label, Multicenter, Multidose, Dose-escalation Study of BMS-936558 (MDX-1106) in Combination With Ipilimumab in Subjects With Unresectable Stage III or Stage IV Malignant Melanoma: (Recruiting) 
- Memorial Sloan Kettering & Yale School of Medicine 
- Requires a tissue sample (UVA banked my ovary) 
- Moffitt study... have to fail ipi first  
- Exclusion Note: Prior therapy with an anti-Programmed death-1 (PD-1), anti-PD-L1, anti-PDL-2, or anti- Cytotoxic t-lymphocyte antigen-4 (CTLA-4) antibody (or any other antibody  targeting T cell co- stimulation pathways) 
- Johns Hopkins would be closest location
- UVA will be participating 
- Must have a lesion that can be biopsied 
- Exclusion Note: Prior therapy with any antibody/drug that targets the T cell coregulatory proteins, including but not limited to, anti-PD-1, anti-PD-L1, anti-PD-L2, anti-CD137, anti-OX- 40,and anti-CD40 antibodies. However, half the patients must have progressed on anti Cytotoxic T lymphocyte-associated antigen 4 (anti-CTLA4) monoclonal antibody therapy
5. J08113: Phase Ib Multicenter Multidose Study of an Anti-PD-1 Monoclonal Antibody (MDX-1106) in Patients with Selected Refractory or Relapsed Malignancies. This clinical trial is designed to evaluate the safety and tolerability of the human monoclonal antibody MDX-1106 in treating patients with advanced cancers. MDX-1106 blocks PD-1, a molecule found on the surface of activated T lymphocytes (immune cells). Normally, PD-1 dampens immune responses at the appropriate time, turning off immune activation. However, laboratory evidence suggests that PD-1 may also suppress immune responses against cancer, and that blocking PD-1 may enhance anti-tumor immunity thereby controlling tumor growth. This is the second trial to evaluate MDX-1106 in cancer patients. In the first-in-human clinical trial recently conducted at Johns Hopkins and 3 other centers, patients received progressively higher doses of MDX-1106 as a single intravenous infusion every 1-3 months. Tumor regressions were observed in some patients with melanoma, kidney, colon and lung cancer, and there were minimal side effects. This new trial will use more frequent dosing of MDX-1106, every 2 weeks in 2-month cycles. Patients with advanced metastatic melanoma (stage III or IV) whose disease has recurred after standard treatment may be eligible for enrollment, regardless of the site of their original melanoma (skin, eye, mucosal, unknown). In addition to melanoma, patients with advanced cancers of the kidney, lung and prostate will be included. Because MDX-1106 has immune stimulatory properties, patients with autoimmune diseases are not eligible.
6. J0918: A Phase 1, Open-label, Multicenter, Dose-escalation, Multidose Study of MDX-1105 Administered Every 14 Days in Subjects with Selected Advanced or Recurrent Solid Tumors. This is a first-in-human phase I trial of a monoclonal antibody targeting Programmed Death Ligand 1 (PD-L1). PD-L1 is a molecule involved in inhibiting the immune system, such that in healthy patients it protects against certain autoimmune diseases. In patients with cancer, however, PD-L1 is often expressed on the tumor cell surface and may diminish the efficacy of an immunologic anti-tumor attack. MDX-1105 blocks PD-L1, thereby allowing the patient’s immune system to more readily recognize and destroy cancer cells. The primary objective of this study is to assess the safety and tolerability of MDX-1105 when administered intravenously every 14 days, and to determine the maximum tolerated dose of this drug. The trial is also designed to evaluate the anti-tumor effects and pharmacologic properties of MDX-1105. Nearly 300 subjects with measurable, advanced, recurrent melanoma or other tumors, including cancers of the lung, ovary, kidney, colon, stomach, pancreas, and breast will be enrolled. Participants with melanoma must have unresectable treatment-refractory Stage III or IV disease. All melanomas regardless of primary site of disease will be allowed. Patients must have a good performance status and adequate hematologic, renal and hepatic function. Prior chemotherapy or IL-2 is allowed, but patients who have undergone therapy with an anti-PD-1, anti-PD-L1, or anti-CTLA-4 antibodies, or any other agents that target T cell co-stimulation, will not be eligible.

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edamaser's picture
Replies 5
Last reply 10/4/2012 - 1:07pm


I had both Yervoy and Sutent, and so can speak to the side effects I had, but, as you know, everyone reacts differently, and this nutty cancer seems to do whatever it wants whenever it wants with no reason or regularity to it.  Thus, my experience really will not be a guide for you, however I'm happy to share.

Sutent kept me stable for almost 2 1/2 years, but that far, far exceeded everyone else on the clinical trial.  Initially I could not tolerate the full dose (37 mg), which gave me a horrendous headache 24/7, so Dr. Sato reduced my dose to 25 mg.  The headache went away, but I had other side effects:  including fatigue, diarrhea, bleeding hemorrhoids, and sores on the soles of my feet (the last was really a problem).

There is a new anti-angiogenic that I understand to be "stronger" than sutent, but has fewer side effects:  Axitinib.  It is not yet approved, but there are clinical trials with it (see  That's all I know about it.

I had both PD-1 and Yervoy (at different times).  The PD-1 kept me stable for a short time, but then I had new liver mets.  I had immuno-embos (Sato) for those, then went on to Yervoy.  This kept my body mets roughly stable (a few bigger, a few smaller), but then I developed two brain mets.  I had those radiated, and will be scanned again next week to see if the Yervoy is helping.  Side effects from Yervoy were not that bad for me, but I'm sure you have heard stories from others about bad side effects.  I had fatigue, taste problems, didn't feel like eating, sores and sensitivity in my mouth, rashes, cycling from constipation to almost diarrhea, and more.

Let us know what you choose.

Lots of luck,


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Kimmie Kay's picture
Replies 10
Last reply 10/3/2012 - 7:54am

I think I may have finally found where I "need to be" ! I posted earlier today on the otherforum and was directed here :)

I am hoping to find someone who has had radiation plaque therapy...will my vision ever come back in the treated eye? My radiation was a little over a month ago and when I had my check up yesterday, I already have a cataract forming. My vision (if you want to call it that) is 20/400?..legally blind in that eye...

While I am thrilled that the tumor is shrinking, I am worried about being able to return to work...I drive school bus, so obviously, without my vision my only source of income is in jeopardy! The Dr. says it could be 3-6 months before the cataract can be removed and after that he can't predict anything.

I really need to hear from someone who has been thru this (I have not been able to find any local help) and just found this site this morning :)


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Just came across this in the latest CURE mag:


Seems like a decent site.  I know the subject came up back during the Philly conference.



Keep Rowing!

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LindaP1017's picture
Replies 1
Last reply 9/24/2012 - 2:23pm
Replies by: ThatHomeschoolDad

 Hi.  I am new to this website.   My mom was diagonosed with Melanoma on her left shoulder 13 years ago.  She had extensive surgery to remove all infected tissue.  She did not have chemo or radiation because the dr. assured her that everything was clean .     In July while having a catscan for another issue, they found a spot on her lung.  They removed part of the lube of her left lung on aug. 27th.  They originally thought it was a Carcinoid tumor, but the pathology reports showed it was Melanoma.      Can this be related to her Melanoma from 13 years ago? Does she now have whats considered Metastic Melanoma?  Is there a chance it could now spread again to other areas??  i am so confused because there was 13 years between..... 

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This is a re-post from the other OM forums and list, so kindly excuse the duplication if you subscribe to multiple sources.  I'm casting a rather large net to try to hit as many eyeballs as possible.

Renee Zalinsky, RN, OCN, Senior Cancer Care Coordinator of the OM program at Thomas Jefferson, and all-around real-life super hero, is reporting that Dr. Sato and the Jeff team are swamped with requests from patients seeking second opinions.

If you are a current or former patient of Dr. Sato, or if you're already having Sato look at your scans while in treatment elsewhere, no problem.  However, the Jefferson team can't handle the influx of new scan review requests from non-patients.  This major hub of the OM world is, incredibly, run with just a few doctors and support staff juggling patients, consults, and original research.

Per Renee:

"Please let patients know for those that are "grandfathered" in, we will still review their imaging and give input.  At present, the patients on hold are those who are just sending their imaging for Dr. Sato's review with no intentions on coming to see him.  I understand patients wanting a second set of eyes looking at their imaging to confirm benign vs. malignant disease.....but this review process is time consuming and taking away from patients under active treatment and spreading everyone a little too thin."

Renee also encourages everyone to write letters to the hospital in support of Dr. Sato's work and to encourage expansion of the Metastatic Uveal Melanoma program.  Here are the big guns to contact:
David P. McQuaid, FACHE
Jefferson University Hospitals
111 S. 11th Street
Gibbon Building, Suite 2210-L
Philadelphia, PA 19107
Richard G. Pestell, MD, PhD, MBBS, FRACP, MBA
Cancer Biology
Kimmel Cancer Center
Bluemle Life Sciences Building
233 S. 10th Street, Room 1050
Philadelphia, PA 19107
Neal Flomenberg, MD
Chairman, Medical Oncology
834 Chestnut Street, Suite 320
Philadelphia, PA 19107



Keep Rowing!

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Dear Friends,


My husband was on the selumetinib for his metastic ocular melanoma.  Scans showed progression of some of the liver tumors.  We're now trying to qualify for pd-1 trial.  Has anyone had good response the anti-pd 1 and a vaccines for liver and bone mets?  Please advise.  Margaret

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margaretrogers57's picture
Replies 4
Last reply 8/22/2012 - 5:30pm

Does anyone know if chemoembolization would help for many small liver tumors.  We have 50 and the largest is 1.6 cm  Help..Margaret

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edamaser's picture
Replies 1
Last reply 8/22/2012 - 4:51pm
Replies by: margaretrogers57

Hi all,


I just want to share a bit of good news.  We can all use good news in this ocean of glum occurrences in which we find ourselves.

Having had two brain lesions, which were stereotactically radiated, I just had a 2-1/2 month follow up brain scan:  NO NEW ONES!

On to body scan in September.


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