CancerCompass message board discussion started by pal5510 on 8/8/2007 http://www.cancercompass.com/message-board/message/all,15113,0.htm Wed, 08 Oct 2008 00:00:00 GMT Wed, 08 Oct 2008 00:00:00 GMT http://backend.userland.com/rss RSS.NET: http://www.rssdotnet.com/ My aunt has had melanoma for 22 yrs.  She is a red head with freckles who broiled in the sun like the rest of us baby boomers.  She is 58.  Since her first episode she has been diligent about her follow ups at Sloan-Kettering where she was originally treated.  She has  had most lymph nodes removed in the early years.  She has not had an incidence of melanoma in 13 yrs.  Several moles that looked suspiscious in that time turned out not to be melanoma.  At her annual visit last July (2006) her doctor even commented that she could now follow up with a regular dermatologist since she has been in remission so long.  Last May, she woke up with what felt like a knot near her navel.  Her primary care doctor did the usual workups with blood etc and initial working diagnosis was a hernia.  The discomfort went away but not the lump.  A CT and biopsy revealed that she had a melanoma tumor growing in her abdomen.  Further testing determined that she had "spots" on ther lung, liver, adrenal and a small tumor on the brain.  The oncologist, Dr. Chapman was amazed that she had no symptoms and stated that he "is treating the diagnosis froim the labs, CT and MRI", because on the surface she is not sick.I have been looking for information about melanoma in metastases after 13 yrs. in remission and haven't found any so I don't know how one might determine any kind of prognosis.  I realize stage IV melanoma is deadly.  What is strange is that she had and still has no symptoms neurologically or any pain, cough etc. other than the temporary pain when the abdominal tumor surfaced.  She had the gamma knife surgery last month on the brain tumor.  As of her latest check up it appears as though the tumor has shrunk and there are no new tumors.  The other tumors are unchanged except for the abdominal tumor which has reduced by approx. half to 2 cm.  She is on Vinblastine, Cisplatin and Temodar with Decadron, Zofran, and Filgrastim as ordered by the oncologist.  Her labs appear to be "good" with only slightly low Hemoglobin counts.  I don't get very detailed information because she is the kind of person who would rather not know the best and worst case scenario.  She doesn't ask questions of the doctor.  I am in AZ, she is in NY so I can only glean information from what she says and then try to research what I can.My mom and I have been so close to her and as everyone else does we pray for a miracle.   She said that the approach the doctor is going to take in the next few weeks is that they will pull the biopsies from previous years and determine what gene is responsible for her particular melanoma and a pill will be formulated to kill off that gene (if I understood her correctly or she understood it correctly).  It's supposed to be a very new procedure, could be a trial.  I didn't know if that was anything like the T-cell procedures they are doing in trial now.   I haven't found any information on any procedure like that.I don't know if there is any more hope in the fact that she felt so well at the time she was diagnosed and other than the side effects of chemo is still feeling relatively good.  Her weight is staying up and she is still active, albeit not as active as she had been, she is fatigued.Is there anyone out there with a similar experience?  What happened?  I am the kind of person who wants to know what to expect, I hate surprises and I want to be prepared.  My mom is a wreck when she talks to me and even if I don't tell her before it is time to prepare for the worst, I would like to know so that I can gather my strength to be there for both of them and my aunt's family.  Is there any realistic hope to be had from the fact that she feels so well?Thanks for any and all input.  Patti pal5510 Wed, 08 Aug 2007 00:00:00 GMT Hi!  Read your story about your aunt who is actually my age.  There is a therapy out there being used for melanoma patients where they use the patient's own actual tumor and send it away to develop a vaccine that can be injected into the patient in hopes of eradicating their tumors.  I don't know much about it except it has only been available for late stage patients and it takes time to develop so the question is whether it can be given while the patient is still battling the disease.  I know a specific case and there was some strict criteria and unfortunately in his case he expired before having a chance to utilize it.  Cancer, unfortunately, can ly dormant for a long period of time almost as though in remission and for what ever reason reoccur.  This is true not only with melanoma but you are never really out of the woods with cancer.  With melanoma, however, when it does recur it seems to strike with a vengeance and in a short period of time is widespread.  This was true of my sister's fiance.  He had negative scans up to a couple months before and then went out for a drive, had a seizure and hit a tree.  Turned out he had brain mets as well as widespread disease as I said over a couple month span.  It is a terrible disease, robbing young and old.  This man had 3 children he left behind, the youngest being 5.  I'm glad your aunt is still feeling well at this time.  I hope she continues to do so but I think you know that there is no cure for her disease at this time.  Best wishes to you and your family! Leemg Thu, 09 Aug 2007 00:00:00 GMT Your story touched me deeply.  I am so sorry for the loss you suffered.  It is the understatement of all understatements and yet I still ask "how can this happen?"  Young and old there is no justifiable reason for the suffering of this insidious disease.  Intellectually I am realistic and afraid, emotionally I am somewhere between denial and hope against all hope. I will take the information you gave me and see if I can match it up to the information my aunt gave me and find what she is actually talking about.  She is outwardly her usual self, but she must be falling apart inside and I can't imagine how one could digest all the information that is given, especially when it is so dire. Thank you for taking the time to respondTake good care, Patti pal5510 Thu, 09 Aug 2007 00:00:00 GMT Patti,  Your aunt is so fortunate to have such a loving andcaring niece.  Best wishes to all of you! Leemg Fri, 10 Aug 2007 00:00:00 GMT