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Melanoma discovered in stomach

Forums General Melanoma Community Melanoma discovered in stomach

  • Post
    NSA
    Participant

      Hello,

      Hello,

      My dad found out last week that he has melanoma in his stomach.  He had been having stomach cramping and issues going to the bathroom since the end of July.  He was going in for his 5 year colonoscopy and told the gastrologist about his symptoms so they did an upper endoscopy.  During the endoscopy they found three spots on his stomach.  They took a sample of one of the spots and called a week later to tell him the results showed it was melanoma.  He went to see a dermatologist (which he had never done before) and they removed a suspicious looking mole, but told him it didn't matter what the test results were on that, he need to see a specialist.  We live in the Richmond, VA area and he has an appointment scheduled for next week at UVA.  That's all we really know at this point so now i'm just trying to research as much as I can for him.  I've been a little overwhelmed with all of the info I have found and would just like to know what we can expect going forward.  What will they most likely do at his first appointment?  What questions should he ask?  Should he get a second opinion?  I've read enough to know that once melanoma is discovered in intermal organs it is stage 4 and it looks like clinical trials are the most common treatment. . . is that right?  Any advice or information would be greatly appreciated.  My dad has always been there for me and I want to do everything in my power to help him fight this. 

      Thank you,

      Nick

    Viewing 14 reply threads
    • Replies
        Sherron
        Participant

          yOU need to have it surgically removed, then try for some type of trial.

           

          Take Care,

          Sherron, wife to Jim FOREVER

          Sherron
          Participant

            yOU need to have it surgically removed, then try for some type of trial.

             

            Take Care,

            Sherron, wife to Jim FOREVER

            Sherron
            Participant

              yOU need to have it surgically removed, then try for some type of trial.

               

              Take Care,

              Sherron, wife to Jim FOREVER

              JuleFL
              Participant
                Hello Nick, researching melanoma is very overwhelming. If you haven’t already done so, click on the Learn More tab for info from this site. There is a brief list of questions to ask the doctor. Also, the aimatmelanoma.org website has a link to questions. You are already asking pertinent questions so be sure to write these down for your visit with your Dad’s doctor. The doctor will probably do some bloodwork on your Dad and review pathology reports; also order some scans (CT, MRI, PET). One thing that is done lately is lab analysis of the biopsy to determine genetic mutations which help determine the course of treatment; ask the doctor about this. This testing is also used to determine which clinical trials are appropriate.

                Best wishes,

                Jule

                JuleFL
                Participant
                  Hello Nick, researching melanoma is very overwhelming. If you haven’t already done so, click on the Learn More tab for info from this site. There is a brief list of questions to ask the doctor. Also, the aimatmelanoma.org website has a link to questions. You are already asking pertinent questions so be sure to write these down for your visit with your Dad’s doctor. The doctor will probably do some bloodwork on your Dad and review pathology reports; also order some scans (CT, MRI, PET). One thing that is done lately is lab analysis of the biopsy to determine genetic mutations which help determine the course of treatment; ask the doctor about this. This testing is also used to determine which clinical trials are appropriate.

                  Best wishes,

                  Jule

                  JuleFL
                  Participant
                    Hello Nick, researching melanoma is very overwhelming. If you haven’t already done so, click on the Learn More tab for info from this site. There is a brief list of questions to ask the doctor. Also, the aimatmelanoma.org website has a link to questions. You are already asking pertinent questions so be sure to write these down for your visit with your Dad’s doctor. The doctor will probably do some bloodwork on your Dad and review pathology reports; also order some scans (CT, MRI, PET). One thing that is done lately is lab analysis of the biopsy to determine genetic mutations which help determine the course of treatment; ask the doctor about this. This testing is also used to determine which clinical trials are appropriate.

                    Best wishes,

                    Jule

                    JerryfromFauq
                    Participant

                      Someone should go with him to take notes and help absorb the information received.

                      Nick, They usually want to get copies of all the related doctors paperwork relating to the melanoma, Bloodwork, endoscopy reports, radiology, PET/CT scans, pathology reports. If you can get these and take copies with you it can speed things up. If not they will have you sign releases for them to mail to the other medical locations to get copies. This can take time. They may want the removed tissue to run their own tests on for verification or may want to take some more of the tissue to run tests on (endoscopy or surgery). Find out which. If you have not had them, they will likely run a combined PET/CT to determine if there is likely further spread of the melanoma. This will determine if surgery is a viable option or if they should go straight to a systemic approach. They use a team approach and the surgical and medical oncologists work together very well. IF there are widespread tumors, a systemic approach is likely required. If just a few closely located tumors they may well want to go ahead and remove them surgically. There are many types of melanoma so know what the pathology reports says about the type of melanoma. If it began in the mucosal tissue and moved to the stomach, and were to reoccur after removal it may have a different type of oncoprotein and DNA mutation than one that started from other locations and so need different subsequent treatment.

                      It sounds like no primary melanoma was located unless it is the mole they removed. If the tumors can be surgically removed, they may not be any trials available and one often when NED (No Evidence of Disease on scans) goes on a watch and wait. Dr Slingluff also conducts vaccine trials that often involve NED melanoma patients.

                      UVA is a good place to go. I went there after a general oncologist told me over 5 ½ years ago that I had a life expectancy of 2 to 6 months. Dr Slingluff (Melanoma surgeon) and Dr Weiss (head of the Hematology/medical oncology department) are my doctors and are great PEOPLE, as well as great Doctors. They are extremely knowledgeable, caring and compassionate men and have staff personnel that complement them very well. Read my profile on here and you will see why I think so much of them. A nurse that had fired two Oncologists asked me for a referral to Dr Weiss about 5 years ago. She is now approaching her 5th anniversary of being NED after Dr Weiss provided her IL-2 treatments. I have not meet the other Oncologists there but have heard very good reports on them from other patients.

                      If they decide that a systemic approach is needed there are a couple of options. Dr Weiss has worked with the IL-2 immunology treatments since the early 1980's (FDA approved it in the late 1990's for melanoma.) It still has the longest lasting results for some and helps about as many people as the new treatments approved last year. Dr Weiss is one of the best in the world at giving and monitoring the IL-2 treatments and has a well trained staff to assist him with them. They also now administer the Yervoy approved last year by the FDA.

                      Dr Slingluff is also participating in the anti-PdD-1 clinical trials (which currently appears to be the best clinical trial to get into).

                      JerryfromFauq
                      Participant

                        Someone should go with him to take notes and help absorb the information received.

                        Nick, They usually want to get copies of all the related doctors paperwork relating to the melanoma, Bloodwork, endoscopy reports, radiology, PET/CT scans, pathology reports. If you can get these and take copies with you it can speed things up. If not they will have you sign releases for them to mail to the other medical locations to get copies. This can take time. They may want the removed tissue to run their own tests on for verification or may want to take some more of the tissue to run tests on (endoscopy or surgery). Find out which. If you have not had them, they will likely run a combined PET/CT to determine if there is likely further spread of the melanoma. This will determine if surgery is a viable option or if they should go straight to a systemic approach. They use a team approach and the surgical and medical oncologists work together very well. IF there are widespread tumors, a systemic approach is likely required. If just a few closely located tumors they may well want to go ahead and remove them surgically. There are many types of melanoma so know what the pathology reports says about the type of melanoma. If it began in the mucosal tissue and moved to the stomach, and were to reoccur after removal it may have a different type of oncoprotein and DNA mutation than one that started from other locations and so need different subsequent treatment.

                        It sounds like no primary melanoma was located unless it is the mole they removed. If the tumors can be surgically removed, they may not be any trials available and one often when NED (No Evidence of Disease on scans) goes on a watch and wait. Dr Slingluff also conducts vaccine trials that often involve NED melanoma patients.

                        UVA is a good place to go. I went there after a general oncologist told me over 5 ½ years ago that I had a life expectancy of 2 to 6 months. Dr Slingluff (Melanoma surgeon) and Dr Weiss (head of the Hematology/medical oncology department) are my doctors and are great PEOPLE, as well as great Doctors. They are extremely knowledgeable, caring and compassionate men and have staff personnel that complement them very well. Read my profile on here and you will see why I think so much of them. A nurse that had fired two Oncologists asked me for a referral to Dr Weiss about 5 years ago. She is now approaching her 5th anniversary of being NED after Dr Weiss provided her IL-2 treatments. I have not meet the other Oncologists there but have heard very good reports on them from other patients.

                        If they decide that a systemic approach is needed there are a couple of options. Dr Weiss has worked with the IL-2 immunology treatments since the early 1980's (FDA approved it in the late 1990's for melanoma.) It still has the longest lasting results for some and helps about as many people as the new treatments approved last year. Dr Weiss is one of the best in the world at giving and monitoring the IL-2 treatments and has a well trained staff to assist him with them. They also now administer the Yervoy approved last year by the FDA.

                        Dr Slingluff is also participating in the anti-PdD-1 clinical trials (which currently appears to be the best clinical trial to get into).

                        JerryfromFauq
                        Participant

                          Someone should go with him to take notes and help absorb the information received.

                          Nick, They usually want to get copies of all the related doctors paperwork relating to the melanoma, Bloodwork, endoscopy reports, radiology, PET/CT scans, pathology reports. If you can get these and take copies with you it can speed things up. If not they will have you sign releases for them to mail to the other medical locations to get copies. This can take time. They may want the removed tissue to run their own tests on for verification or may want to take some more of the tissue to run tests on (endoscopy or surgery). Find out which. If you have not had them, they will likely run a combined PET/CT to determine if there is likely further spread of the melanoma. This will determine if surgery is a viable option or if they should go straight to a systemic approach. They use a team approach and the surgical and medical oncologists work together very well. IF there are widespread tumors, a systemic approach is likely required. If just a few closely located tumors they may well want to go ahead and remove them surgically. There are many types of melanoma so know what the pathology reports says about the type of melanoma. If it began in the mucosal tissue and moved to the stomach, and were to reoccur after removal it may have a different type of oncoprotein and DNA mutation than one that started from other locations and so need different subsequent treatment.

                          It sounds like no primary melanoma was located unless it is the mole they removed. If the tumors can be surgically removed, they may not be any trials available and one often when NED (No Evidence of Disease on scans) goes on a watch and wait. Dr Slingluff also conducts vaccine trials that often involve NED melanoma patients.

                          UVA is a good place to go. I went there after a general oncologist told me over 5 ½ years ago that I had a life expectancy of 2 to 6 months. Dr Slingluff (Melanoma surgeon) and Dr Weiss (head of the Hematology/medical oncology department) are my doctors and are great PEOPLE, as well as great Doctors. They are extremely knowledgeable, caring and compassionate men and have staff personnel that complement them very well. Read my profile on here and you will see why I think so much of them. A nurse that had fired two Oncologists asked me for a referral to Dr Weiss about 5 years ago. She is now approaching her 5th anniversary of being NED after Dr Weiss provided her IL-2 treatments. I have not meet the other Oncologists there but have heard very good reports on them from other patients.

                          If they decide that a systemic approach is needed there are a couple of options. Dr Weiss has worked with the IL-2 immunology treatments since the early 1980's (FDA approved it in the late 1990's for melanoma.) It still has the longest lasting results for some and helps about as many people as the new treatments approved last year. Dr Weiss is one of the best in the world at giving and monitoring the IL-2 treatments and has a well trained staff to assist him with them. They also now administer the Yervoy approved last year by the FDA.

                          Dr Slingluff is also participating in the anti-PdD-1 clinical trials (which currently appears to be the best clinical trial to get into).

                          NSA
                          Participant

                            Thank you all for the replies.  You've been a big help.

                            NSA
                            Participant

                              Thank you all for the replies.  You've been a big help.

                              NSA
                              Participant

                                Thank you all for the replies.  You've been a big help.

                                NSA
                                Participant

                                  Thank you all for the replies.  You've been a big help.

                                  NSA
                                  Participant

                                    Thank you all for the replies.  You've been a big help.

                                    NSA
                                    Participant

                                      Thank you all for the replies.  You've been a big help.

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