CancerCompass message board discussion started by marieH on 7/29/2007 http://www.cancercompass.com/message-board/message/all,14825,0.htm Tue, 07 Oct 2008 00:00:00 GMT Tue, 07 Oct 2008 00:00:00 GMT http://backend.userland.com/rss RSS.NET: http://www.rssdotnet.com/ My mother-in-law has just been diagnosed with Stage IV metastatic melanoma. Does anyone know of people who have been successful in clinical trials? My mother-in-law is only 56 years old, and she just to happens to be the Director of Patient Care for a Hospice and the President ofthe Oncology Nursing Association. The problem with this is, she only witnesses the people who DON'T make it through this horrible disease. I am trying to convince her to go to a research hospital like Moffit Concer Center in Tampa (she lives in FL). If I can tell her about how it has worked for other people, maybe she will consider it. marieH Sun, 29 Jul 2007 00:00:00 GMT Hi, I'm not sure if any of this information will help you, but it may be worth trying (in fact in this situation ANYTHING is worth looking at in my view).  I have a friend of 29 years old who has Stage IV melanoma - he was about to start the Centacor trial but when he went for the CT Scan immediately prior, it was discovered he had metasteses to his brain.   He was unable to start the trial and had 10 days of radiotherapy which is meant to be followed by Temazolomide.   I have trawled and trawled the internet and found numerous other trials - a lot of which he is ineligible for because of the brain mets, but some of which he could be considered to take part in.  The situation is devastating and I've never felt as sad or as frustrated in my life.   He just gets on with things and does his best to stay upbeat - I on the other hand rage at the world at the unfairness of this.   I have had several very very positive responses (all from doctors and med staff in the USA - we are in the UK)   It would take me for ever to list every trial on here that I have found - but if you send me a message or email or whatever, I will find some of the most helpful people and pass details to you.   A starting point is http://www.clinicaltrials.gov/  I have found a lot of information there.  gillianfn Mon, 30 Jul 2007 00:00:00 GMT Clinical trials are at best just  openings for  "patients to become tests cases for  doctors" I would look into Low Dose Naltrexone to get stable first and safe and think about  trials as  track records don't look promising... I  was told of my metastases in February with no chance  to survive as no treatment  would benefit.  My good friend told me about Low dose Naltrexone and have been on it since.  I am doing great and feel fine and shouldn't be typing this to you now as I had only  4- 9 months.  You have to do your  reading and we are here to help.  The links in this group are there for your help and all the information.  Your oncologist won't know about it so all of us get our prescription from  our GP's. LDN can stop /or regress  cancer but  not a cure.  But stops it  right where it is  without any further  progression..  I take it for cervical cancer now metastatic to my lungs and have slowed and stopped progression.  It has had great results with metastatic liver cancer so you are fine also. The websites below  explains what it is and what it does... http://www.lowdosenaltrexone.org/ http://www.lowdosenaltrexone.org/ ldn_and_cancer.htm http://www.susiemaui.com/low_dose_naltrexone.htm http://health.groups.yahoo.com/group/LDN_4_cancer/ Be well, Dee         GemHK Mon, 30 Jul 2007 00:00:00 GMT I am so sorry to hear about your friend. I am 29 years old myself, and I couldn't imagine what he is going through. I understand your "rage at the world" it just isn't fair. My husband and I were prepared that someday we would lose our parents, but not now, we are too young. We are expecting our second child, and now it is becoming a race to make sure she see's her new grandchild.Her melanoma had metastases to the brain as well, and she also has it on the lower part of her spine. This was originally found because she had neurological symptoms about a month ago which took her to the emergency room. They found the brain tumor there, and they removed it that evening. But the pet scans they just did revealed the spots on her spine. Then the doctor told her it was only a matter of months.Thank you for the website. I will continue to do research and hope for the best, at this point it is all I can do. Plus, I have to be positive for her and my husband so that they don't think it is hopeless. But when I am alone, I definitely lose it. marieH Mon, 30 Jul 2007 00:00:00 GMT I have sent all of the websites to my mother-in-law, along with your information. I am hoping some of this makes her feel like she is somewhat in control of what is going on.Thank you so much for your responses.. marieH Mon, 30 Jul 2007 00:00:00 GMT