Experimental treatments for inoperable Stage IV

efitzsimons

My sister in law has been diagnosed with melanoma. She has a tumor in her lungs that they can't take out, and has been told she has 4 mos left. We are trying to get her in to any of the experimental studies/trials, but so far noone thinks she is a good candidate becuase her tumor keeps growing and they can't remove it. I'd love any advice or information about the trials that people have tried, and also how you found those trials and got started with them. Her doctors are not being very proactive about her treatment right now, so we as her family are trying to get the ball rolling ourselves.
Thank you all in advance for any information you can offer.

callen

Hi my name is Cindy. I had Melanoma outside my lung. The only surgeon who would operate was Dr. Donald Morton at John Wayne Cancer Institute in Santa Monica, California. He does surgery that others won't. I then had my tumor made into a vaccine from the Hoag Hopsital in Newport Beach, California. I have had no reoccurance in my chest for almost 16 months. Good luck. I now believe you need a least 3 opinions. They also don't know how long you have and get rid of people who are that way. Keep on fighting.

michelebateman

callen said:

Hi my name is Cindy. I had Melanoma outside my lung. The only surgeon who would operate was Dr. Donald Morton at John Wayne Cancer Institute in Santa Monica, California. He does surgery that others won't. I then had my tumor made into a vaccine from the Hoag Hopsital in Newport Beach, California. I have had no reoccurance in my chest for almost 16 months. Good luck. I now believe you need a least 3 opinions. They also don't know how long you have and get rid of people who are that way. Keep on fighting.

Cindy: My uncle was recently diagnosed with Stage IV melanoma. He was thought to be a candidate for an international clinical trial of a cancer vaccine (canvax), but was excluded because he had a recurrence between the original site and another lymph node. I thought all vaccines were in clinical trials, and not approved by the FDA. We are almost desperate. Any advice? His doctors are pushing him towards biochemotherapy, which will very likely make him very sick, but hopefully will be better than the alternative. Thanks
p.s. I am a one year survior of a cancerous brain tumor
Michele B.

efitzsimons

michelebateman - I posted the original message in this string, and although it looks like it's too late to help my sister-in-law, I have found out about two doctors who are doing research into treatments for melanoma. One is Dr. Steven Roseburg at the National Cancer Institute, and the other is Keith Flaherty at the University of Pennsylvania. If you google either of these scientists you can get information about their research. You have to be very proactive about contacting them, but both of the doctors were very helpful in my sister-in-law's case, even when it became clear that they could not help her.

Good luck!

lcyates

My husband has metastatic melanoma...no primary. He has up to 5 tumors in his brain, 2 surgically removed and begins radiation today. He also has a lung tumor that is operable, however they haven't done anything with it yet b/c of they are just trying to get the brain under control. My advice for your sister is to go to either Staten Island or Wake Forest University (Winston Salem University)...they do stereotactic radiosurgery extracranially...meaning they can give her a super boost of radiation (gamma knife) on the tumor on the lung. They have had great results with this at Staten Island, and have just begun doing it in Winston. Please don't give up on her, and don't ler HER give up on her. Inoperable does NOT mean incurable!! I have done tons of research since my husband was diagnosed in March and there are a lot of things you can get done. Get away from those doctors if they are not trying to help her. They should be at least able to tell her where to go to get treatment they do not offer. Also look into alternative treatments...essiac tea and things of that nature. Don't let her die just because the doctors said she was going to!!!! If we had listened to everything we had been told in the last 3 months, my husband would be on his death bed...instead he is working full time...even getting a little overtime in! He is doing great and I will go to ANY length to make sure he stays that way! Have they offered her chemo? Anything at all? God is the only one that knows how long we are going to be on this earth, and he doesn't tell doctors. But if you think you are going to die, and give up hope, then you will die. Please email me if you have any questions...lcyates22@bellsouth.net

Best of luck...I will pray for you...LeAnne

CherylD

efitzsimons said:

michelebateman - I posted the original message in this string, and although it looks like it's too late to help my sister-in-law, I have found out about two doctors who are doing research into treatments for melanoma. One is Dr. Steven Roseburg at the National Cancer Institute, and the other is Keith Flaherty at the University of Pennsylvania. If you google either of these scientists you can get information about their research. You have to be very proactive about contacting them, but both of the doctors were very helpful in my sister-in-law's case, even when it became clear that they could not help her.

Good luck!

I am currently in a clinical trial at the University of Pennsylvania with Dr. Keith Flaherty. He is a very good doctor and personable. Unfortunately, I don't believe the current treatment is working in my case, but it has helped several people. I have heard that a new study is coming to Louisville, KY Brown Cancer Center--Dr. Donald Miller in approximately 5 weeks. Not certain of the details, but I definately plan to find out!

Bruce2768

callen said:

Hi my name is Cindy. I had Melanoma outside my lung. The only surgeon who would operate was Dr. Donald Morton at John Wayne Cancer Institute in Santa Monica, California. He does surgery that others won't. I then had my tumor made into a vaccine from the Hoag Hopsital in Newport Beach, California. I have had no reoccurance in my chest for almost 16 months. Good luck. I now believe you need a least 3 opinions. They also don't know how long you have and get rid of people who are that way. Keep on fighting.

Hi, I am a caregiver and wife of bruce with stage IV melanoma. Donald Morton is his surgeon and Stephen O'Day oncologist. He has had it in 4 organs, did the bio chemotherapy, and then went in remission for nearly a year, then has had recurrences in the soft tissue in his leg and groin area ( original site). He is doing once a month IL-2 (hospital stay), and daily shots for 17 months. Dr Morton hasn't offered him any vaccine since his treatment with IL-2. Have you heard any info about vaccines that don't exclude you with prior treatment.

Unknown

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