treatment for liver melanoma

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hoping someone can give me some info and recomendations! My sister had occular melanoma 3 years ago ,and was treated with radiation implants to shrink the tumor. She found out last week that she has melanoma of the liver. The prognosis doesn't sound very good,and there is very little info out there on this. Can anyone tell me what is the treatment for this and where is the best place to go for this/ Any info would be appreciated. thanks Karen

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Specializes in Critical Care.

This forum is not an outlet for medical advice. You and your sister need to talk with your healthcare providers.

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Obviously she has and like I said the prognosis is not good.I was hoping some of my peers with expierence in this area had some other options I could research.Most nurses on this site are not so quick to post negative comments.

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Specializes in Oncology, Research.

One place to look is www.clinicaltrials.gov to see what kind of research in ongoing in that area.

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Specializes in Maternal - Child Health.

As a melanoma survivor, stories like your sister's strike fear in my heart, and gratitude for my many years of disease-free health.

Was your sister treated at a specialty hospital (Will's Eye, for example) for her ocular melanoma? If so, please consider getting back in touch with her treatment team to request a referral to a related center for her current needs. If not, please sit down with her primary care doctor to discuss a prompt referral to a national melanoma center. Metastatic melanoma is treatable, but there are not many centers in the U.S. experienced in this disease process.

Best to all of you!

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Thankyou both for your quick replies ,and good thoughts.I will try to keep you updated. The latest info she got today was that the drug the Dr. fels is most succesful in treating is not going to have any more avialable for release from the FDA until spring. He is hesitant to try conventinal chemo because it doesn't work on this type of tumor and makes people too sick to use the other when avialable. As you can tell my family is praying for a miracle and they DO happen,so keep her in your thoughts and prayers. Thanks again you guys are wonderful...Karen

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My sister has had a second opinion with another oncologist. He feels she should not wait for treatment and mentiomioned several options other than the Bristol Meyer drug study the first oncologist was suggesting.She also spoke with an intake nurse at Wills eye clinic where she had the radiation implant done for the initial uveal melanoma. They are going to review her case on Monday. There is a physician there who is doing a lot of research and treatment in this area.Hopefully since she had her initial treatment there and this is such a rare cancer{even more so in her case as she is under 50.}she will be accepted into this program.She has been busy this week getting a pep scan and a brain scan[the first oncologist didn't feel this was needed??}Again thanks so much for the advice and info it was a big help...Karen

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Specializes in Maternal - Child Health.

Thanks for the update. I'll keep your sister in my prayers.

You mention her initial treatment at Will's Eye. If she is in the Philly area, there are quite a few options for treatment there. Penn has the Pigmented Lesion Clinic, which is where I was initially treated. Jefferson has an active melanoma program including a number of clinical trials, and I understand that Fox Chase has developed a melanoma program as well. A couple of the docs who treated me have moved on to Fox Chase.

I know this is a disappointing and frightening development, but it sounds like she may be in an area where she has access the best possible treatment.

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She is in Chicago.SHe was referred to Wills by her oncologist initially. Fortunatly she is able to go where she needs and not just where her insurance dictated.The oncologist she spoke with last week and it sounds like she will be going to is from Northwestern in Chicago and has access to Wills and MD Anderson both ,she is on the agenda Monday for Wills so hopefully they will accept her or at least be able to point her in the direction that will be the most benificial for her. Hopefully her age {45}and the fact that this was caught very early.[she was clean last year at this time]will all be in her favor and give her better longterm outcome. Thanks again for youe encouragment and suport.Hopefully she will come into contact with some really caring nurse like you in her journey. I will keep you updated . She should find out something as to what and where she willbe treated by this week. Aslo PET not PEP ..wasn;t paying attention to what I was typing:typing..Karen

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Karena123,

I was reading your post and I have a family member with very similar health circumstances to what you described in your post earlier this year regarding your sister. My family member was diagnosed with ocular melanoma in 2006 and the same family member was recently diagnosed with cancer of the liver. I hope your sister's health has improved and that perhaps you can share with me any information on treatments, meds, doctors and clinics that you felt were beneficial/not beneficial in her treatment. Thanks.

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She contacted Dr Sato at the Wills eye clinic in Phillidelphia.He seems to be the top in the country.You can do a google search for info on him.

She was ina double blind clinical trial at the beginning of the year.It turned out she was not getting the med and her tumor was not shrinking. She will start treatment at Northwestern in Chicago,which is where she lives,next week. She will be recieving radioshperes{spelling?}. She also joined a web suport group group for Occular melanoma.I found this by doing an internet search.I found this site helpful for different clinical trials http://www.clinicaltrials.gov/ . This next link is for the suport grour and user list http://www.lafn.org/~bc534/OcularMelMets.htm I read it but do not contibute. My sister occasionaly comments and post questions. All the people are very suportive and helpful.

My sister is getting very well educated about this disease,and insurance companies and how they operate,Tell your family member to be prepared to fight the insurance every step and to keep fighting to get what they need to get the best treatmens for them'

She also went to see a chines Dr, who treats the body and not the disease. He uses eastern medicine to balance her body. She is taking lots of vitamins.

She is feeling really well right now and is very positive and hopeful.She has lots of love and suport.

I hope this info helps you and your family. Let me know how things are going..Karen

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Karen,

Thanks so much for your response. The eye was removed a few years ago. The doctors that removed the eye didn't tell my family that there was a good chance of the melanoma spreading to the liver. The news that the doctors have given us now regarding the liver cancer is not very hopeful. Your response regarding your sister's continued success against the cancer and the insurance company gives us great hope. Thanks also for the links to the support group and the other websites. God bless you and your sister. I pray for you all. Thanks again!!

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