CancerCompass message board discussion started by Juliann on 12/12/2006 http://www.cancercompass.com/message-board/message/all,8258,0.htm Tue, 02 Dec 2008 00:00:00 GMT Tue, 02 Dec 2008 00:00:00 GMT http://backend.userland.com/rss RSS.NET: http://www.rssdotnet.com/ My father had skin melanoma on his chest approximately 4 years ago.  He had sentinel lymph node biopsy performed and it was clear.  He has seen his family physician every 3 to 6 months since then but no additional testing was done.  Approximately 4 weeks ago, I started noticing a slight delay in my father's speech when reading out loud.  We requested an MRI to determine if he had a mini stroke.  They immediately called him to the hospital and scanned his body.  He has three tumors in his frontal lobe, nodules in his lungs, liver and adrenal glands.  Besides the recent change in his mental status, dad is in perfect health.  Blood work, liver function, and other testing looks great.  They biopsied his liver but reported they did not get a good tissue sample or there was no cancer cells in the biopsy.  No additional biopsies were performed.  He stayed in the hospital for 3 days and was started on steriod treatment.  He has had 3 weeks of radiation and they are now decreasing the steriod.  He is scheduled to start Chemotherapy next week.  He will be taking Temador by mouth for 5 days and then repeat in 28 days.  I live 500 miles from my parents and have had difficulty getting information about his condition and treatment.  He has seen the onocologist once and is not sceduled for a follow-up appointment for another 6 weeks.  He briefly speaks with the radiologist at the cancer center every Friday but little information has been discussed with my mother.  My initial reaction was o.k. lets find out what we are up against and start making plans for treatment.  My understanding from online research is that a typical prognosis is 3 to 6 months for metastatic melanoma,  yet the physicians seem to be working in a slow motion.  Does anyone have information about successful treatments being offered, nutritional / supplemental information, or similar stories about this type of cancer?  Any information would be greatly appreciated. Juliann Tue, 12 Dec 2006 00:00:00 GMT  On 12/12/2006 Juliann wrote:My father had skin melanoma on his chest approximately 4 years ago.  He had sentinel lymph node biopsy performed and it was clear.  He has seen his family physician every 3 to 6 months since then but no additional testing was done.  Approximately 4 weeks ago, I started noticing a slight delay in my father's speech when reading out loud.  We requested an MRI to determine if he had a mini stroke.  They immediately called him to the hospital and scanned his body.  He has three tumors in his frontal lobe, nodules in his lungs, liver and adrenal glands.  Besides the recent change in his mental status, dad is in perfect health.  Blood work, liver function, and other testing looks great.  They biopsied his liver but reported they did not get a good tissue sample or there was no cancer cells in the biopsy.  No additional biopsies were performed.  He stayed in the hospital for 3 days and was started on steriod treatment.  He has had 3 weeks of radiation and they are now decreasing the steriod.  He is scheduled to start Chemotherapy next week.  He will be taking Temador by mouth for 5 days and then repeat in 28 days.  I live 500 miles from my parents and have had difficulty getting information about his condition and treatment.  He has seen the onocologist once and is not sceduled for a follow-up appointment for another 6 weeks.  He briefly speaks with the radiologist at the cancer center every Friday but little information has been discussed with my mother.  My initial reaction was o.k. lets find out what we are up against and start making plans for treatment.  My understanding from online research is that a typical prognosis is 3 to 6 months for metastatic melanoma,  yet the physicians seem to be working in a slow motion.  Does anyone have information about successful treatments being offered, nutritional / supplemental information, or similar stories about this type of cancer?  Any information would be greatly appreciated.My mother who recently passed away had mucosal melanoma which is different from skin melanoma but because there wasn't wasn't much treatment for mucosal (because of its rarity), they had given her skin melanoma treatment.  If the cancer has already metasticized in your father, then I wouldn't be surprised if they try to do immunotherapy with your dad.  If the standard chemo (Temador, Taxol)  doesn't work then the docs might try to give him something that will try to get his immune system to attack the cancer.  There are interferon shots and high dose interleukin-2 that they could dispense to try to get his immune system up.   There's less nausea with immunotherapy but because the immune system is being instigated, the side effects are similar to having a flu: alot of fatigue, possible fever, chills.  That stuff didn't work for my mom  too well because mucosal was way different than skin melanoma but every thing I read said that the interferon and interleukin treatments had moderate results with skin based melanoma.  depending on the stage of your dad's cancer, the dana farber clinic has a melanoma vaccine available.  not sure of its effectiveness.  Also alot of the Boston cancer centers and MD anderson out in texas were doing CTLA4 clinical trials (another immunotherapy) for melanoma.  my mother never made it around long enough to make it to MD Anderson but I know  they are tops in melanoma research and treatment.  The Dana Farber and Beth Israel Deaconess up in Boston here are very good for melanoma treatments. Anyway just thought I'd try to help with all the stuff I had learned this past year during my mom's ordeal.  I wish you and your dad the best of luck.my only advice to you is to try to stay positive no matter what and to cherish every moment you have with your dad.   Regards, Ryan    Rl2006 Wed, 13 Dec 2006 00:00:00 GMT Ryan,Thanks for the information.  It is greatly appreciated. Juliann Wed, 13 Dec 2006 00:00:00 GMT I have a friend with Metastic melanoma and have been doing a great deal of research.  The Angeles Clinic in Santa Monica CA. Dr. Omid Hamid and Steven Oday are doing some new treatments with melanoma and Duke University also has some good trials.  There is a melanoma vacinne that is being used in addtion with other drugs that also looks promising.  Md Anderson in Houston and Sloan Kettering in NY are tops in Melanoma as well and have some new trials.  Many of the trials exclude you if you have a brain metastis but I don't think you said your dad had one.   Block Medical Center in Chicago is a great center for the nutritional piece.  My sister in law was diagnosed with stage IV breast cancer and went there and started their vitamin and nutrition program and also did a chemotherapy treatment with her doctor here.  She was not given a good prognosis at all and now is in complete remission.  My friend is also in the waiting stage and is being started on temador at the time.  He unfortunatly has a brain met so is not eligible for many trials.  He is going to the Angeles clinic this month to see if they can help.  Good luck God Bless. Resjrr Sun, 07 Jan 2007 00:00:00 GMT Resjrr,Thanks for your response and information.  It was very helpful.  My father's condition has dramatically declined since I wrote last.  He is extremely anxious and paranoid.  We have a hard time getting him to his doctor's visits because he does not want to travel.  I would like to take him out of state to the MD Anderson facility but I'm not sure he is going to allow us to do this.   They have delayed his temador treatment and instead of putting him on a 5 day on 23 day off dosage they are now looking at a constant 40+ day dosage.  He has lost 20 lbs just with radiation and I'm worried that he does not have enough body weight to get through chemo.  Your family and friends living with cancer will be in our thoughts and prayers. I have a friend with Metastic melanoma and have been doing a great deal of research.  The Angeles Clinic in Santa Monica CA. Dr. Omid Hamid and Steven Oday are doing some new treatments with melanoma and Duke University also has some good trials.  There is a melanoma vacinne that is being used in addtion with other drugs that also looks promising.  Md Anderson in Houston and Sloan Kettering in NY are tops in Melanoma as well and have some new trials.  Many of the trials exclude you if you have a brain metastis but I don't think you said your dad had one.   Block Medical Center in Chicago is a great center for the nutritional piece.  My sister in law was diagnosed with stage IV breast cancer and went there and started their vitamin and nutrition program and also did a chemotherapy treatment with her doctor here.  She was not given a good prognosis at all and now is in complete remission.  My friend is also in the waiting stage and is being started on temador at the time.  He unfortunatly has a brain met so is not eligible for many trials.  He is going to the Angeles clinic this month to see if they can help.  Good luck God Bless.  Juliann Wed, 10 Jan 2007 00:00:00 GMT