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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I was diagnosed 9/19 with uveal melanoma. The doctor wants to do the full check up and tests to see if its spread. But we noticed the tumor (or my husband did) late may. It went from non existant (atleast that WE could see) to pretty big over night. I waited until august before having it looked at (I dont like jumping to conclusions and freaking out right away). From late may to today its about tripled in size. Doc says its taken over about 40% of the eye.

Anyways. My question is if its spread to other parts of my body (or even if it hasnt spread) what tolls could I notice it taking on my body? Example like overly tired. My menstrual cycle is very off and has been lasting twice as long as my normal cycles. My joints hurt (mainly knees). But im most annoyed with the period. Is this something I should bring up to my cancer specialist and ask if he can check out hormone levels when he does the other tests (like if he says its not associated with the cancer in any way)? Should I see my regular family doctor? My concern with that was she will be clueless as to what may or may not be cancer related...

Has any one else expierenced anything similar?

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My husband was just diagnosed with stage 4 mucosal melanoma in my maxillary. On Aug 22 2014 he had surgery for what we thought was just a sinus infection but turned out to be stage 4 mucosal melanoma. His ENT said he removed as much of the mass as possible and referred us to an oncologist. We seen the oncologist today, who basically said, there is nothing I can do for him. He is now referring him to UCLA to see if there is something that can be done for him there. He had an MRI and it did not show that it has spread. I feel so helpless at this point. I am feeling like he has been given a death sentence. Are there any stage 4 mucosal melanoma cancer survivors?  

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Hello,

This is my first time posting here.  I'm a biologist who is researching uveal melanoma.  I have my PhD in biomedical sciences and did a postdoctoral fellowship in a cancer biology lab.  I have made an animal model of the disease and I am trying to understand the signals that activate tumors and allow them to become more aggressive and capable of spreading to other organs.

I am wondering if all of you have a favorable view of biological research for this disease?  How do you feel about using animals for research?  I am sure that you may know that samples from patients are limited now with the development of improved therapies.

Would you consider donating to help a biologist set up their new lab and continue investigating the pathways that activate this cancer type?  I am just starting a professor position at a new school and I am trying to start up my lab on limited budget.  Online crowdfunding seems to be one way to fund scientific research these days, and I'm just testing the waters here to see if patients with uveal melanoma are receptive to that approach.

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I recently was diagnosed with a cilliary body melanoma and had radioactive plaque therapy earlier this month. I opted to have genetic testing done but I'm not entirely sure I understand what those results will tell me. Can anyone explain? I will get my results August 28, 2014 and want to be as prepared as possible.

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Kkincaid239's picture
Replies 4
Last reply 7/18/2014 - 11:03am
Replies by: Anonymous, paperdetective, Kkincaid239

Hello my name is Kevin, I just turned 19 and have been Diagnosed with stage 3A melanoma. I had a Medium Sized Black freckle below my inner eye which Turned out to be melanoma. I've been looking all over the Internet for people around my age and how they dealt with their interferon treatments. I worked part time went to school full time and maintained a fairly vigorous workout schedule before I was diagnosed and went through the three seemingly standard surgeries; melanoma removal, plastic surgery/reconstruction, and lymphnode disection in which they took 54 lymphnodes out of my neck and I'm still recovering from and going to physical therapy for.

Anyway, I will more than likely start interferon within the next week and I would really appreciate if I could get few hints, tips that would help me, or answer a few questions I have. Such as, were able to return to school, work, and excersizing throughout the course of the treatment. How long did the treatments take during the first month? When did you start feeling the side effects? what side effects effected you the most? IHow did the injections compare? Do the injections hurt? I really appreciate anything you guys tell me. Thanks!

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Replies by: joelcairo

I opted to have a needle biopsy for Decisiond -UM testing prior to having the radiation plaque implanted in early May 2014.  

Can anyone tell me the cost of the testing?  And did you have problems getting insurance to pay for it?

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ThatHomeschoolDad's picture
Replies 3
Last reply 6/23/2014 - 9:33pm
Replies by: Annie Laurie Smith, Anonymous, paperdetective

Wasn't there a list of OM docs on this site?  I see the generic melanoma map on the left nav, but I thought we had our own.  No?

Renee @ Jeff has a patient looking for an onco near Alabama or Columbus, Georgia.

 

--Tom

Keep Rowing!

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degood's picture
Replies 2
Last reply 5/31/2014 - 2:21am
Replies by: joelcairo

My husband had a 4 mm melanoma removed from his back in Nov. 12. They could not get dye to go to lymph nodes so they done a pet scan and found nothing. End of Jan. this yr. he started to have vision problems, flashing light etc. We went to an eye specialist who has termed it as a suspicious chroidial nexus and is watching it, we go back in June for check-up. The eye specialist also said this has nothing to do with the melanoma from his back, that even though it is called an melanoma it is totally different than the skin type. Looks etc. In the meantime, he has developed 10 new little places on his skin and one inside his lip. We went to a new dermatologist yesterday who said that the melanoma has spread including his eye! He took a biopsy of 3 places which he says he is positive it is melanoma!! He kept saying things like no use to put him through the eye treatment, mentioned chemo, brain scan, lung scan. Had a hard time understanding him and he acted like a robot or something.  He just had an exam in Feb. at the surgeons office no lumps lymph glands chest x-ray Ok, even took him out to 6 mo. visits, as he was doing pretty well. His liver test was high so they took him off cholesterol medicine and told him no more aleve as they will raise liver function test and last blood test it had come down slightly.  The new guy really was very negative I even asked so you are saying there is no hope for him, his reply I didn't say that. Then why is there no use to put him through treatments? I am extremely upset and very very scared.

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Has anybody else ever had an eye try to reject the implanted tantalum rings, as 'foreign bodies,' months after proton beam treatment?  Mine are now barely covered by the sclera, visible like blue ink polka dots on my eye-ball, and irritating to the inside of my upper eyelid.  I don't know yet what, if anything, the surgeon will suggest should be done about it, and I am wondering if it is a common occurence.  Any comments would be welcome.

Jean

jean

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Racheal1987's picture
Replies 2
Last reply 3/2/2014 - 2:24pm

Hi Everyone,

I'm completely new to this site and am already excited about all the info that seems to be on here. I am a 26 year old living in Vegas currently but will be moving very soon to Japan for a great job opportunity. I am currently healthy (all negative on my PET scans, blood work, etc.). I however am only 2 years out of my diagnosis so I still will need checkups every 6 months with an oncologist and probably monthly check ups with a retinal specialist. My question is, does anyone know of any resources or great doctors in Japan in the Tokyo or Yokohama areas? I know this is far fetched, but I just thought I'd throw it out there. 

Also, I'm wondering if anyone else has experienced radiation reinopathy after having the radtaion plaque surgery done? My eye formed a pretty large blood clot about a year and 2 months after my surgery and I've had to have extensive PRP laser done on my retina in order to stop the abnormal blood vessels from forming. I am just wondering what experience everyone else has had with that? 

After my surgery, I had severly decreased vision (maybe 75% gone due to the placement of the tumor being smack in the middle of my eye) in my treated eye and since the laser treatments have destroyed what little healthy retina I had left, I'm 98% blind now in that eye. It's hard to deal with at times, it makes me really sad to consider what a valuable treasure I've lost and the treatments are super painful to me, even with the painkillers the doctor gives me before the treatment. My doctor at UCLA advised me that if my body doesn't get the blood vessels under control that it could lead to glaucoma and possible enucleation after that, which is obviously the worst case scenario and my worst nightmare. I'm in a wait and see phase right now to see if the laser is having any effect on these blood vessels forming, and I hope to God that it's working. It's hard sometimes being the only person that I know of with this condition because no one really understands what we go through or how we feel. It would be so awesome if anyone else could share their experience and maybe some advice with me?

Thanks for reading this long post and for any help that you all could give!

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jmccay's picture
Replies 3
Last reply 2/21/2014 - 12:04pm

Hi Team,

My mother is meeting with Docs tomorrow (Jan 16) with the option to start ipi / Yervoy.  She is 73 and already pretty weak and tired and in bed most of the time.  So she is worried about side-effects and "what's the point?".

She had her eye out last Feb 2013 but the melanoma has spread to long bones and liver too.  So far this treatment is the only option being offered, or we let nature/cancer take it's own course.

We would love to hear from anyone - especially OM - with ipi experiences.

Much Appreciated & Best of Luck!
James

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Hi everyone, 

I wanted to take a second to remind everyone that CURE OM will be hosting its 3rd Annual Patient & Caregiver Symposium, Eyes On A Cure, at The Hotel Palomar in Los Angeles, CA, on March 1 & 2.  This year's event is being held in conjunction with Jules Stein Eye Institute and UCLA. For more details on the event, click on the link below:

http://www.melanoma.org/get-involved/calendar-of-events/eyes-cure-patient-caregiver-symposium-los-angeles-ca

As always, this event is free. There is a block of hotel rooms that is reserved for just a couple more days. If you have any questions, please contact me at MStoffa@melanoma.org.

 

Hope to see you there!

Molly

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

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ThatHomeschoolDad's picture
Replies 1
Last reply 1/14/2014 - 7:29pm
Replies by: jeanjean

Renee Zalinsky at Jefferson asked me to spread the word:

 

Webinar next Thursday, November 21st at 1pm EST with Dr. Jingduan Yang who will discuss integrative care and the mind/body connection in confronting cancer. Dr. Yang is the Founder and Medical Director of Integrative Psychiatry and Natural Medicine at New York's Tao Institute.
 
We want to provide questions from the OM community to Dr. Yang in advance of the webinar, so please submit ideas and inquiries to Jessica:  jessica@ocularmelanoma
 
Audio dial-in: +1 (773) 897-3000
Access code: 686-229-485
 
 
About Dr. Yang

Dr. Jingduan Yang is a leading physician, board-certified psychiatrist and international expert on classic forms of Chinese Medicine. He uniquely incorporates acupuncture, Chinese herbal medicine, neuro-emotional technique, nutritional and dietary consultation, psychotherapy and medication management in the care of patients with a variety of emotional and physical illnesses. Following family tradition, he is a fifth generation teacher and practitioner of Chinese medicine, specializing in acupuncture.

Dr. Yang received his medical and neurology training at the Fourth Military Medical University in Xian, China and completed a research fellowship in clinical psychopharmacology at Oxford University in the United Kingdom as well as residency training in psychiatry at Thomas Jefferson University in Philadelphia. He has authored numerous peer-reviewed articles and has been a speaker at several national and international conferences and academic forums. In 2008, after two years of intensive training in areas including botanical medicine, mind-body physiology, nutrition, and holistic clinical care, Dr. Yang completed a prestigious Integrative Medicine Fellowship at the University of Arizona launched in 2000 by internationally-recognized integrative medicine pioneer Dr. Andrew Weil.

Dr. Yang is the founder and medical director of Tao Integrative Medicine. In addition, Dr. Yang is the Director of Oriental Medicine and Acupuncture Program at the Jefferson Mryna Brind Center of Integrative Medicine and Assistant Professor of psychiatry and human behavior at the Thomas Jefferson University Hospitals.

 

Keep Rowing!

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Molly- CURE OM's picture
Replies 2
Last reply 12/10/2013 - 3:57pm
Replies by: joelcairo

Hi everyone, 

I wanted to take a second to post some photos (hopefully it worked!) from the recent CURE OM Scientific Meeting. This meeting was held this past Sunday, November 17, 2013, in Philadelphia. Approximately 130 researchers and physicians attended this bi-annual event. 

 

Sunday, November 17, 2013

Today's workshop organized by CURE OM, NCI, and SMR- Emerging Research in Uveal Melanoma and Implications for Treatment: Current Status and Future Directions- was opened this morning by CURE OM Co-Founder and Director, Dr. Sara Selig, who gave patient and caregiver perspectives by sharing the words you all shared with us- thank you for helping us open this important international scientific meeting with words from the OM patient/caregiver community! We are hopeful today's meeting will get us closer to a cure!

 

Monday, November 18, 2013

Yesterday's international scientific meeting, organized by CURE OM and the NCI, was the largest scientific gathering specifically focused on ocular melanoma yet! CURE OM is working with the NCI to write up a report from yesterday's meeting. The morning sessions were spent sharing research updates from different labs and trials around the world-- including updates from CURE OM research grant recipients. A good deal of the afternoon was spent discussing how to have the best and most effective international collaboration to accelerate clinical trials, and, thus, more effective treatments, for patients and we are making headway developing better collaborative infrastructure for clinical trials and a way to make them more accessible to patients!
 
Tuesday, November 19, 2013
We had a dynamic panel discussion during Sunday's CURE OM/NCI scientific meeting- discussing the logistics of accelerating international OM clinical trials. Thank you to all who participated-- we are getting closer to more effective treatments for patients, stronger international collaboration, better access for patients, and, ultimately, a cure!

From L to R: Dr. Keith Flaherty, Massachusetts General Hospital Cancer Center, Dr. Mario Sznol,Yale Cancer Center, Dr. Howard Streicher, National Cancer Institute, Dr. Takami Sato, Thomas Jefferson University Hospitals, Dr. Poulam Patel,The University of Nottingham, and Dr. Richard Carvajal, Memorial Sloan-Kettering Cancer Center

 
Best, 
Molly

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

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Anonymous's picture
Anonymous
Replies 1
Last reply 11/21/2013 - 5:15pm
Replies by: Molly- CURE OM

Hi Everyone!

It is hard to believe that the 2014 CURE OM Eyes On A Cure Patient and Caregiver Symposium is just 3 1/2 months away! Our planning committee is busy constructing an educational and enjoyable symposium. CURE OM continually strives to bring you the most up to date information, as well as cover the educational topics that you as a community want to see covered. 

We want to hear your input, as the OM community. It is because of this reason that the Eyes On a Cure 2014 Steering Committee constructed this very brief 5 question survey. Please take a few minutes to complete this survey so we can continue to provide you with the information that you would like to learn about.

https://www.surveymonkey.com/s/57V8BDK

 

Thank you!

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

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