CancerCompass message board discussion started by carleyshope on 8/28/2007 http://www.cancercompass.com/message-board/message/all,15677,0.htm Thu, 28 Aug 2008 00:00:00 GMT Thu, 28 Aug 2008 00:00:00 GMT http://backend.userland.com/rss RSS.NET: http://www.rssdotnet.com/ My husband and I feel like we have been backed into a box medically speaking and have only our faith keeping us strong, Dr's aren't giving us any options....is there anything else out there that anyone could recommend to treat my husbands advanced metastazed brain tumors??  Our story....  My husband had a malignant mel removed from his back in 97..with regular 6m checkups..in Oct 06 he developed a lump under his left arm...turns out that was maliginant mel and it travelled to his brain...since Oct 06 he has had a craniotomy to remove the one tumor, lymph node removal, went down to Bahamas to get a cancer vaccine, full head radiation, and two gamma knife radiation for more tumors in the brain...he now has two spots in his liver...the Dr's (yale and sloan kettering) don't have much more to offer for his brain tumors..they say more surgery or radiation would diminish his quality of life, he was on temador but the disease looks to be progressing in his brain and dilantin for seizures.  He is exhausted, blurred vision, in pain at times, loses his words and a very weak from the high levels of decadron he has been on since January but he still can enjoy our time together and our children, 16, 15 and 2. I just don't know what to expect next and we are scared.  carleyshope Tue, 28 Aug 2007 00:00:00 GMT Hello carleyshope.......No wonder you feel like you have been backed into a box you have all been going through so much. My heart goes out to you. I am hoping the following website wil be of help. The numbers look promising. You can find lots more information on this if you do a Google search. This natural substance is being used widely in the alternative and complementary field of medicine but your own particular traditional doctors might not be aware of it. Many clinical trials have been done as it has been used in conjuction with chemo with great results also. http://www.supportivetherapy.com/melanoma-patients.ews Blessings to you and your family.... Shemay -----quote------ Shemay Tue, 28 Aug 2007 00:00:00 GMT have you consulted hospice?  They can be a big help during this time.  As you know, metastatic melanoma is an uphill fight.  God bless.  Here is a sight with some articles on brain mets:http://www.mpip.org/library/libframeset.shtml?/cgi-bin/mpip/getlinks.pl?Metastatic+Melanoma:Brain  Oncrx Tue, 28 Aug 2007 00:00:00 GMT  On 8/28/2007 carleyshope wrote:My husband and I feel like we have been backed into a box medically speaking and have only our faith keeping us strong, Dr's aren't giving us any options....is there anything else out there that anyone could recommend to treat my husbands advanced metastazed brain tumors??  Our story....  My husband had a malignant mel removed from his back in 97..with regular 6m checkups..in Oct 06 he developed a lump under his left arm...turns out that was maliginant mel and it travelled to his brain...since Oct 06 he has had a craniotomy to remove the one tumor, lymph node removal, went down to Bahamas to get a cancer vaccine, full head radiation, and two gamma knife radiation for more tumors in the brain...he now has two spots in his liver...the Dr's (yale and sloan kettering) don't have much more to offer for his brain tumors..they say more surgery or radiation would diminish his quality of life, he was on temador but the disease looks to be progressing in his brain and dilantin for seizures.  He is exhausted, blurred vision, in pain at times, loses his words and a very weak from the high levels of decadron he has been on since January but he still can enjoy our time together and our children, 16, 15 and 2. I just don't know what to expect next and we are scared.   I'm sure your doctors are aware of any trials that your husband would be eligible for such as MDX010 and would have told you.  You probably know all about clinical trials by now.  If you are like me, you have done tons of research on what is out there.  Perhaps the kindest thing is to contact hospice as has already been suggested.There is very active message board at www.mpip.org if you don't already know about it.  There are tons of people there who are living with stage !V that could possibly give you more insight with personal experience.My best to you and sometimes our faith is not the only thing that keeps us going, but the best.Mrs. C Mrs. c Tue, 28 Aug 2007 00:00:00 GMT Thanks to all for your kind thoughts, prayers and information...I will look at them immediately.  Brian just got out of the hospital again and is stable.  I have just had palliative/hospice nurse out last week upon your suggestions.   She was capable but no real strong connection with Brian, her presence made him uneasy, I  am going to see if we could meet another nurse that would make Brian feel a bit better about the visits.I'll let you know how we are doing. God bless.   carleyshope Tue, 04 Sep 2007 00:00:00 GMT