CURE OM Forum


Welcome to the CURE OM Forum, a community bulletin board designed to address the needs of the ocular melanoma community – patients and caregivers alike. Here you’ll find answers to questions about OM diagnosis and treatment, and support from people from all stages, levels of treatment and from all over the world.

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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 MMendoza@melanoma.org

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

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Mrs. D'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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Mrs. D's picture
Replies 6
Last reply 10/4/2012 - 5:18pm
Replies by: lak, Mrs. D, Nan in Nebraska

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? 
 
Thanks!!! 
 
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: http://clinicaltrials.gov/ct2/show/NCT01024231?term=BMS-936558&rank=5 (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. http://www.hopkinsmedicine.org/kimmel_cancer_center/centers/melanoma/clinical_trials/
 
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. http://www.hopkinsmedicine.org/kimmel_cancer_center/centers/melanoma/clinical_trials/

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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!)...like health professionals everywhere, when they hear "melanoma" they think skin. 

I've posted something about OM on my blog (DottieGSez) at wordpress.com 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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christianreina's picture
Replies 7
Last reply 10/9/2012 - 3:59pm

Good evening,

INTRODUCTION

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
Melanoma"
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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Chris Jordan's picture
Replies 2
Last reply 11/22/2012 - 4:25am
Replies by: lak

Saw this in a tweet from @MRFCureOM: http://talkabouthealth.com/can-a-very-large-choroidal-tumor-truly-be-low-risk-if-shown-so-in-monosomy-3-test-result-i-thought-large-usually-meant-high-risk wherein Dr. William Harbour pretty much discounts the genetic test for monosomy 3 in favor of the Class1/2 Castle Biosciences gene expression test.  He says, in part, "I do not trust the monosomy 3 test, so I cannot specifically comment on that aspect of the question. The monosomy 3 test is inferior to the Castle Biosciences test that gives a class 1 or class 2 result. All but 2-3 centers in the US are now using it."

I know the two tests were discussed in the June CURE OM web educational event but my question is, does anyone know what Dr Harbour is basing his  opinion on?  Is there some study that indicates one is a more effective predictor or metastatic OM or is this just a little salesmanship and a case of "not invented here?"

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ThatHomeschoolDad's picture
Replies 3
Last reply 10/12/2012 - 11:42pm

My latest scans show two dinky, stable liver spots, maybe even necrotic nothings.  IHP did the trick.  The few lung spots I have aren't changing either.   There is a new paraspinal spot in my back muscles, only about 1cm.  Yesterday, Sato said ipilimumab with sterotactic zapping could be "curative."  Now, I haven't heard that word at all up to this point, and I'm sure he didn't mean "Yay, you're not stage IV anymore."  However, I'm also sure that a giant brain like Sato would not drop "curative" lightly.  The thinking is that while I'm still comparativley young (chuckle) and healthy, and I tolerated the big hammer blow that was IHP, then it's time for the big hammer blow that is Ipi.

Google Yervoy side effectrs and you get a lot of posts on the cutaneous forums here.  Ipi-sh*ts seem to be a major concern, but as with any other side effects, anecdotes are all over the map.  

I could duck into a trial at Sloan first, but I seem to be on this track of trying big things first and having them work so far.  Has anyone been prescribed Entocort with Ipi?  Cutaneous posters seem to favor it over Imodium.

--Tom

Keep Rowing!

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This might be old news, but Sato just told me Harbour isn't at Washington U. anymore.  Googled it and sure enough, he's now at Bascom Palmer in Miami.  Wonder if his HDAC trial is still on track to start?

 

http://www.eyecancer.com/doctor/WhosWho.aspx?nID=79&Profile=J.+William+H...

 

-Tom

Keep Rowing!

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margaretrogers57's picture
Replies 6
Last reply 11/21/2012 - 2:14am

We're in the anti-pd-1 study at moffitt.  So far Dr. weber has only seen a few ocular primaries and no reponders only stable disease.  Here's hoping we change that to responders.  Anyone responded long term on this drug with an ocular primary.  We start on Oct. 31.  Any comments welcome.  Margaret

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I cannot believe that noone has posted yet about this weeks Webinair.

 

Excellent.  Thankyou very much cure OM and i was able to ask a question!

Please thank Dr Weber and Dr Flaherty for their informitive talks.

 

I would like to ask furhter questions - sorry i guess I never grew out of the "Elephants Child " syndrome.

 

To Dr Weber I would like to ask further about Ipilimumab.

3 years ago the recommendation was to permanently discontinue Ipilimumab if the ALT/AST rose >7x normal.

Now it is at 5x normal.

This must mean that some people who survived the hepatitis and maybe got a response will still be alive.  So obviously this is a saftey issue. However is it that as the drug was rolled out into more widespread practice some of the less experienced centres failed to appreciate the risks soon enough. In his experience was there a link to those with the more severe hepatitis -5-7 x normal having clinical benefti from the drug.  Would he consider reintroducing Yervoy in these patients if they were to relapse now 3 years later. Or would he observe the current saftey guidelines - the tempatation for patients with few options must surely be to risk the drug again? Which way would his clinical experience push him?

Also to Dr Weber- concerning T lymhocytes and TIL

Are the size of the metastases in OM relevant in the T lymphocyte infiltration. Are smaller metastases less likely to have the "bad" lymphocyete- the exhauseted ones . Is it possible that substances that are released by the tumour cells which cause the exhaustion in T cells. ? So early treatment would be beneficial.?

What size tumour is needed for TIL and does this lead to more of the lymphocytes being in the "exhasuted state"

Have studies been done using the circulating lymphocytes in OM rather than the tumour "exahausted " ones and are these able to be grown more easily?

Once again many thanks for giving us this wonderful oppourtunity.

 

Carpe diem

Lesley

 

 

 

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Replies by: parismom, ThatHomeschoolDad, Anonymous, Molly- CURE OM

I was just informed by Dr J. William Harbour, ocular oncologist and researcher at Bascom Palmer in Miami (who did my biopsy), that there will be a special segment on his uveal melanoma cancer research airing this Sunday, December 2, 2012 on the TV program "CBS Sunday Morning", starting around 9 am Eastern time. Feel free to spread the word elsewhere. This will be similar to the earlier NY Times piece on the subject, but much more in depth and personal.

 

Peter L in Leiden, Netherlands

 

PS

Think of us European OM patients who will not be able to watch this, not even online repeats, as these get blocked by teh broadcasters for European viewers.

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Molly- CURE OM's picture
Replies 3
Last reply 10/24/2013 - 3:20am
Replies by: Anonymous, Chris Jordan, ThatHomeschoolDad

Just wanted to let everyone know that the CURE OM forum will be hosting a Q & A session with Dr. Harbour on Wednesday 12/5/2012 from 9am EST to 9pm EST.  Post your question on the forum and they will then be forwarded on to Dr. Harbour.  Answers to the questions will be posted on the forum on Monday 12/10/2012.  Also, don't forget about the CURE OM facebook page, that can be found at the following link.

http://www.facebook.com/cureom

Here is the link to Dr. Harbour's segment on CBS Sunday morning.  While yes, the segment was short and geared more towards genetic testing, we must keep in mind that OM was on a national news show.  

http://www.cbsnews.com/8301-3445_162-57556650/a-need-to-know-the-worst-n...

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

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Molly- CURE OM's picture
Replies 4
Last reply 12/10/2012 - 9:47pm

Hi everybody!  Some of you may have seen me post this on the OM support page on facebook, but I wanted to post it here as well.  I am thinking about hosting a CURE OM meet and greet in January somewhere in Chicagoland.  This event will be a very informal gathering for us to just sit and talk in person.  At this time I am looking at 1/19, 1/20, 1/26, or 1/28.  Again, this will be very informal.  It will be a time to sit and talk with eachother.  Please let me know if you would be interested in coming to something like this.  I will post more details as they become available.  

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

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sunnybunch2's picture
Replies 1
Last reply 12/13/2012 - 5:30pm
Replies by: Molly- CURE OM

Hi,

 

My brother is having his first embolization for metastic ocular melanoma with liver mets next week.  Looking for anyone that has had them and exactly what your side effects were and how long they lasted?.  When were you able to return to work?

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