upset and confused!!

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5/1/2014 9:16am
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Replies: 2

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.

joelcairo - (5/31/2014 - 12:14am)

This board isn't very busy. I hope you've been able to get some support.

It sounds more like the skin melanoma spread to multiple locations including the eye. If so, you need to deal with a specialist in cutaneous (skin) melanoma. I'm not an expert, but I believe most such cancers that spread have a BREF gene mutation, and there is a drug called vemurafenib that sometimes has extraordinary success with these particular cancers.

Ocular melanoma, by which I mean melanoma that originated in the eye, is a different form of cancer with its own characteristics. It has its own particular gene mutations, and I would think that it is possible to distinguish between the two types. Maybe but under a microscope, but I think genetic testing would tell the story.

Personally I would push to have the doctors figure out EXACTLY what your husband is suffering from. It is not acceptable to have them not treating him, or possibly making decisions based on faulty assumptions. I would want the eye tumor biopsied and tested, and the same done with the skin cancer that was removed last November. (It's possible in theory for him to have two separate cancers.)

In addition to vemurafenib for skin melanoma, BOTH types of melanoma have been shown to benefit from Yervoy, a drug that helps the immune system to activate against cancer cells.

If it turns out to be a manifestation of ocular melanoma, you could contact the office of Dr. Takami Sato in Philadelphia, who is probably the world expert on the subject. He generously consults with other oncologists who have less experience with this rare disease. There s an active mailing list called OCU-MEL (I assume you can find this using Google), and another more active forum here:

http://forum.ocularmelanoma.org/

Best wishes

 

 

joelcairo - (5/31/2014 - 2:21am)

Typo alert: the mutation in cutaneous melanoma is BRAF, not BREF, but if you've been dealing with this for a month then you have probably learned about it already.