• MELANOMA ASSOCIATED RETINOPATHY request and warning

    Asked by afbrat1117 on Sunday, May 25, 2014

    MELANOMA ASSOCIATED RETINOPATHY request and warning

    I am a melanoma patient who developed a rare complication called Melanoma Associated Retinopathy. I am the only patient in my area (Boston) who the doctors (Mass General/MEEI and Dana Farber) have ever had with it so possible treatments are uncertain. Has anyone here ever had this or known anyone with it? It is not melanoma of the eyeball (ocular melanoma), it is cutaneous melanoma that has gone bloodborne and circulates and lands in various organs especially the eyes clogging the retina vessels so I am going blind. It also makes the melanoma highly mets. Would appreciate contact of anyone has ever had/or even just heard of this. beyond my search for other MAR pts, I just want to warn other melanoma patients if you notice ANY visual problems get to a opthamologist to get screened for this. consult w UC-DAVIS, they run the labs for this. also vis probs can be the first sign of melanoma so warn all F&F to see opthamologist immed for sudden eye probs. TIA!

    10 Answers from the Community

    10 answers
    • Gabba's Avatar
      Gabba

      I am so sorry for your diagnosis. You are certainly in good hands at MEEI and DF. (I am an MGH grad and a patient at Dana Farber and live in Quincy, MA)
      My eye doctor has been checking me for ocular melanoma since my breast cancer diagnosis almost 4 years ago. She told me there is a very small risk of breast cancer metasticizing to the eye (who knew?).
      I had a squamous cell carcinoma removed 2 weeks ago. Go for my skin checks every 6 months as I have 4 paternal uncles who died of melanoma.
      What I want to know, is what is the next step for you...will you be involved in any trials at UC-Davis? I am keeping you at the top of my prayer list (if that is OK with you). Will you please let us know how you are doing from time to time?

      ***You have delivered a very important Public Service Announcement here today and we should be very grateful to you for that***
      Good luck and God bless! Grace

      over 6 years ago
    • melanomamama's Avatar
      melanomamama

      Thanks for the heads up (or eyes up.) I thought I had "seen" it all, but I had never heard of this particular nightmare scenario. I hope they can pull a rabbit out of a hat for you.

      over 6 years ago
    • afbrat1117's Avatar
      afbrat1117

      Thanks! I am in a clinical trial but that basically consists of tests since there is no accepted treatment. What they decided to try experimentally was to treat it like lymphoma since it is essentially bloodborne melanoma floating around so an 18 mos (6mo each) IVIG, Cytoxan, Rituxan. but was just wondering if anyone else ver heard of/had it and what they tried to do in their case. it's thought to be rare but they are finding when running these superspecial blood tests that more and more melanoma pts have it undetected so they are considering expanding screening, though now it is still in the rare/not covered by insurance category (I get a free lab via the clinical then oay fro a second lab $600 for one blood test! but the treatments are covered) I am on no rush to try the chemo cocktail bc it has limited results c 7% (hold it steady but no cure) so for 18mos of chemo torture, no thanks for 7%. was just mentioning in case anyone dealt with it and had a better tx odds; also bc I never heard of it, my drs never heard of it and it took quite some time to get it pegged down by MEEI and I have been told I am their only pt ever. so wanted to spread the word bc it could be lurking in others so report any ocular sx right away and mention this to them (MAR, melanoma associated retinopathy and reference dr sobrin at MEEI) bc my dr at home basically referred me to MEEI and even then I started off at neuro onc bc they thought it was a melanoma tumor in the eye or brain/optic nerve and instead found this through the labs. hope no one else gets it but just wanted to sound the warning about melanoma and eye sx! many are unaware! all mel pts should have a thorough eye exam by an opthamologist yearly and report any sudden sx, symtoms tend to show up when a new tumor is forming and it may be before it is clinically apparent so high MAR lab numbers can indicate mets etc. hope nobody else gets this but just wanted to share the eye warning! as they told me at MEEI, it's not even the eye issue ,that's just a symptom the melanoma is growing so BOLO!

      over 6 years ago
    • Gabba's Avatar
      Gabba

      Thanks for filling in some of the history, treatment options and referral information. You have done a wonderful service here. Give us an update once in awhile. I will be thinking of you and praying that any progression is slow and manageable.

      over 6 years ago
    • SueRae1's Avatar
      SueRae1

      Hugs, healing vibes and prayers. Thanks for the information, I am so sorry that you are going through so much. But as Gabba said you are in good hands.

      over 6 years ago
    • afbrat1117's Avatar
      afbrat1117

      yes I am definitely thankful to have the best doctors around! Just bizarre being the only one with something/weird complication lol! glad to have found this forum as well!

      over 6 years ago
    • melanomamama's Avatar
      melanomamama

      Have they explained why a systemic melanoma treatment like ipilimumab (also called Yervoy) wouldn't be appropriate to try? I mention this because my scans have been clear for two years now after four ipi infusions, and that includes brain scans. I had a brain tumor removed surgically, only to have it grow back and then radiated. Since it hasn't recurred again, they think the ipilimumab has crossed the blood/brain barrier and is probably at work inside my skull. The question I would ask is, why wouldn't ipi work for melanoma cells that are floating around in the blood? Ipi has a pretty good success rate, so it might be worth asking. I don't know where you live, but my top-notch oncologist is also a melanoma researcher. He is Dr. Brendan Curti at Providence hospital in Portland, Oregon, and he has pulled me from the brink of the abyss more than once. If you are excluded from getting ipi because you don't have the FDA approved criteria, I have heard of people getting permission directly from a pharmaceutical company for a one-person trial. You'd think the company that manufactures Yervoy would be thrilled to find another use for its obscenely expensive melanoma drug, so they might be amenable to taking you on, especially since the condition is rare enough that they might never be able to put together a big enough group for a regular clinical trial. Just a thought that might up the grim percentages for you.
      Constance Emerson Crooker

      over 6 years ago
    • Omlor's Avatar
      Omlor

      I have MAR. Was treated with severL rounds of heavy duty steroids. It stopped Thea antibodies from destroying the lining before they got to my ones and rods. Lost all my night vision and a big chunk of peripheral but can see cleRly what I look right at. So that means reading and TV yes. Driving no. Stage 4 Cancer has been in remission for a year and during that time. Vision has remained unchanged. If you want more info I'm at [email redacted]. Being treated at Moffitt Cancer Center in Tampa.

      almost 6 years ago
    • zazufluffy's Avatar
      zazufluffy

      I too have MAR.. it has been 8 years now. Completely blind without light. Popping and flashing all the time.

      over 5 years ago
    • carcar66's Avatar
      carcar66

      I too have MAR. Diagnosed 1.5 years ago. Doctor said he would rather take a wait and see approach rather than put me on any kind of drug therapy. I wish they knew more about this disease. My symptoms actually began 5 years ago (2 years before the cutaneous melanoma showed up).

      over 5 years ago

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