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June 28, 2012 at 12:46 am #20410clover101Participant
My sister is currently battling the fallout from her ocular melanoma. After having her eye removed four years ago, we thought her disease had been defeated. We were wrong. She is undergoing radiation for two brain metastases and as soon as that treatment ends, the focus will shift to her liver.
According to her PET scan, her liver seems to be consumed by active disease. From what I can gather from other postings on this forum-it seems as though most people deal with multiple small tumors. I haven’t read much about extremely large tumors–or disease that permeates entire organs.
Does anyone know if extremely large tumors or active disease that seems to be throughout an organ are treated the same way? Can you have “whole liver radiation” like you can “whole brain”? Or is the only option chemo/immunotherapy? I’ve read that most ocular melanomas are negative for the B-RAF mutation, so I suspect that the best option for immunotherapy will be Yervoy.
Thank you to so many of you who have shared your experiences and positive words of hope.
CJune 28, 2012 at 1:54 am #55076NanParticipant
I would contact Dr. Takami Sato, Thomas Jefferson Univ., Philadelphia ASAP. He sees more metastatic ocular melanoma folks than anyone in the country. He does different liver directed therapies. You can send your info. and latest scans and they review cases every Monday morning. But it sounds like your sister has quite a bit of involvement and I guess if it were me I’d make an appointment as soon as possible.
Renee M Zalinsky, RN, OCN
Senior Care Coordinator
Jefferson Kimmel Cancer Center
1015 Chestnut St., Suite 622
Philadelphia, PA 19107
Give her a call, she is WONDERFUL and will get back to you very quickly.
I too, have ocular melanoma, diagnosed 2002, metastases to the liver in 2009. I just attended a symposium in Philadelphia, Eyes On a Cure, and there is a lot in the pipeline. I am on a re-induction of Yervoy, having had stability for a year after my first course, which was a trial. I will have scans in Aug. so keeping my fingers crossed.
Best wishes to you and your sister.
Nan in NebraskaJune 28, 2012 at 6:41 pm #55077lak1Participant
i would consider 2 things SIRT Selective internal radiaton and PHP or IHP . Pingbank does the latter, SIRT is widely available in US and Dr Sato has started using it. Dr Nutting of Co an intervential radiologist could look at the scans and tell you whether it might be possilbe.
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