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  • Post
    Jaime.30
    Participant

      Hello my name is Jaime and my husband is a melanoma warrior.  He was diagnosed April of 2009 with Stage III A Melanoma, which started as a flesh colored lump on his right ear.  He had part of his ear removed and had a radical neck dissection to remove 25 lymph nodes…one of which was positive.  He went on to do Interferon for 10 of the 12 months when something showed up on a brain MRI and our doctors said Melanoma 90% sure….discontinue the Interferon and see a Neurosurgeon.

      Hello my name is Jaime and my husband is a melanoma warrior.  He was diagnosed April of 2009 with Stage III A Melanoma, which started as a flesh colored lump on his right ear.  He had part of his ear removed and had a radical neck dissection to remove 25 lymph nodes…one of which was positive.  He went on to do Interferon for 10 of the 12 months when something showed up on a brain MRI and our doctors said Melanoma 90% sure….discontinue the Interferon and see a Neurosurgeon.  CT scans and a stealth MRI were done and there appeared to be 2 or 3 small lesions on the brain just above the ear where the primary tumor was.  Dr. says you are only 33, this is in a low risk area of the brain…we wanna go in and take it out…no watching it.  He had a craniotomy on September 2nd and the results were shocking.  They removed a ping pong sized area of what turned out to be inflammation.  No Melanoma cells were found.  We are very happy about this of course but we do not know what is causing this and it is know to be associated with tumors.  The plan now is to wait keep rescanning the brain and hoping that nothing comes back.  The MRI right after surgery was totally clear.  After a couple weeks of using a walker then a cane my husband is doing well. He is not the same on the left side…weaker and a bit unsteady at times but doing so well. A friend of mine that I met on a Facebook Melanoma group suggested I look here for maybe someone who has had a similar situation.  Thank you for reading.  God Bless.

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        BethA in VA
        Participant

          Hi Jamie.  Welcome to this wonderful site.  We are all here because Melanoma has interrupted our lives.  Many good people are here with tons of information and experience.  And most of all support thru our fears and concerns. 

          Good luck to you and your husband.  He has been thru alot in a short amount of time.  I am glad he is doing well following his surgery.  Keep fighting and stay positive.  He is very lucky to have your support.   Beth 3/B

           

           

           

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            Jaime.30
            Participant

              Beth, Thank you for the warm welcome!  I am very proud of my husband Eston for all that he has gone though.  He has a positive attitude which I think goes a long way!

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              Jaime.30
              Participant

                Beth, Thank you for the warm welcome!  I am very proud of my husband Eston for all that he has gone though.  He has a positive attitude which I think goes a long way!

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              BethA in VA
              Participant

                Hi Jamie.  Welcome to this wonderful site.  We are all here because Melanoma has interrupted our lives.  Many good people are here with tons of information and experience.  And most of all support thru our fears and concerns. 

                Good luck to you and your husband.  He has been thru alot in a short amount of time.  I am glad he is doing well following his surgery.  Keep fighting and stay positive.  He is very lucky to have your support.   Beth 3/B

                 

                 

                 

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                Phil S
                Participant

                  Jaime      My husband was diagnosed with muscosal melanoma in January of this year, and he started radiation after his surgery.  After a few weeks of radiation, my husband complained about ringing in his ears, and his local doctor ordered his first MRI.  His CAT/PET scans had been clear prior to starting radiation, but had never included his head area.  I will never forget that on Good Friday, right before we were heading to visit family for Easter, our doctor told us that Phil had two tumors in the base of his skull.  All the local doctors thought these growths were melanoma. So, due to their location and the complexity of the situation, we stopped radiation immediately and we were sent to Dana Farber. 

                  Phil's case was reviewed by the Brain Tumor Board in Boston and none of these doctors were sure what Phil's growths were, some clearly thought melanoma, others including our new melanoma doctor thought not.  Anyway, they all decided that they couldn't get to his tumors easily for a biospy (too risky), so they all decided to re-scan him in one month.  I spent the entire month worrying sick, and thinking the worst.  But, his next MRI showed no change in these growths.  One doctor said to me "you are not out of the woods yet", like anyone who deals with the aggressive nature of melanoma ever feels like that again.  Anyway, Phil had his third MRI in Boston in July and these head growths still have not changed at all, in over that four month time.  In the meantime, back in May, Phil started interferon and that is his current treatment.

                  Sorry this reply is so long, but I guess what I am trying to say is that one thing I learned over the last several months is that life is so uncertain and melanoma makes you live that concept every single day.  Right now, Phil is doing well, and I feel confident that his head growths are just Phil's weird head.  As you know, once you start scanning people, all kinds of things appear and you need the initial road map, so the doctors can compare any new changes.  Back in April, I was a total wreck, and now I look at that big scare we had, as a blessing, because we absolutely love our melanoma team at Dana Farber, and feel fortunate we were referred there.  Keep the faith, and take care.    Valerie (Phil's wife)

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                    Jaime.30
                    Participant

                      I am happy to hear that this is remaining the same…surely that is a great sign!  The scanning has resulted in several false alarms with Eston.  Radiation of his neck and ear had cause a few of the lymph nodes that remained in the area to show reactive on the PET scans so they did several ultrasound guided needle biopsies to keep checking that all was well.  We keep preparing to go to battle yet again only to get news of no melanoma present…which is great of course but I hate seeing him go through so much.  He is a bit disappointed that he was not able to complete the last two months of the Interferon, when it turned out to not be melanoma in the brain, he was so determined to finish!  Take care Jaime

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                      Jaime.30
                      Participant

                        I am happy to hear that this is remaining the same…surely that is a great sign!  The scanning has resulted in several false alarms with Eston.  Radiation of his neck and ear had cause a few of the lymph nodes that remained in the area to show reactive on the PET scans so they did several ultrasound guided needle biopsies to keep checking that all was well.  We keep preparing to go to battle yet again only to get news of no melanoma present…which is great of course but I hate seeing him go through so much.  He is a bit disappointed that he was not able to complete the last two months of the Interferon, when it turned out to not be melanoma in the brain, he was so determined to finish!  Take care Jaime

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                      Phil S
                      Participant

                        Jaime      My husband was diagnosed with muscosal melanoma in January of this year, and he started radiation after his surgery.  After a few weeks of radiation, my husband complained about ringing in his ears, and his local doctor ordered his first MRI.  His CAT/PET scans had been clear prior to starting radiation, but had never included his head area.  I will never forget that on Good Friday, right before we were heading to visit family for Easter, our doctor told us that Phil had two tumors in the base of his skull.  All the local doctors thought these growths were melanoma. So, due to their location and the complexity of the situation, we stopped radiation immediately and we were sent to Dana Farber. 

                        Phil's case was reviewed by the Brain Tumor Board in Boston and none of these doctors were sure what Phil's growths were, some clearly thought melanoma, others including our new melanoma doctor thought not.  Anyway, they all decided that they couldn't get to his tumors easily for a biospy (too risky), so they all decided to re-scan him in one month.  I spent the entire month worrying sick, and thinking the worst.  But, his next MRI showed no change in these growths.  One doctor said to me "you are not out of the woods yet", like anyone who deals with the aggressive nature of melanoma ever feels like that again.  Anyway, Phil had his third MRI in Boston in July and these head growths still have not changed at all, in over that four month time.  In the meantime, back in May, Phil started interferon and that is his current treatment.

                        Sorry this reply is so long, but I guess what I am trying to say is that one thing I learned over the last several months is that life is so uncertain and melanoma makes you live that concept every single day.  Right now, Phil is doing well, and I feel confident that his head growths are just Phil's weird head.  As you know, once you start scanning people, all kinds of things appear and you need the initial road map, so the doctors can compare any new changes.  Back in April, I was a total wreck, and now I look at that big scare we had, as a blessing, because we absolutely love our melanoma team at Dana Farber, and feel fortunate we were referred there.  Keep the faith, and take care.    Valerie (Phil's wife)

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                        bluepeople
                        Participant

                           Hi,

                          Welcome!   I am new to this board too.  My husband was just diagnosed and will be starting interferon in about a month.  He has his first PET scan next week so we are keeping our fingers crossed that everything is ok.  So far everyone has been so wonderful giving words of advice and hope.  It is definitely hard with the ups and downs.  I hope that good things continue to come your way. 

                          Akilyn

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                            Jaime.30
                            Participant

                              Hi!  Thank you for the welcome!  I hope that all comes back clean on the PET scan!  Will be sending good thoughts your way!  The ups and downs are very hard and we have had so many false alarms that the emotional roller coaster brings devastation to pure joy!  Take care Jaime

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                              Jaime.30
                              Participant

                                Hi!  Thank you for the welcome!  I hope that all comes back clean on the PET scan!  Will be sending good thoughts your way!  The ups and downs are very hard and we have had so many false alarms that the emotional roller coaster brings devastation to pure joy!  Take care Jaime

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                              bluepeople
                              Participant

                                 Hi,

                                Welcome!   I am new to this board too.  My husband was just diagnosed and will be starting interferon in about a month.  He has his first PET scan next week so we are keeping our fingers crossed that everything is ok.  So far everyone has been so wonderful giving words of advice and hope.  It is definitely hard with the ups and downs.  I hope that good things continue to come your way. 

                                Akilyn

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                                jag
                                Participant

                                  Was the ping pong area all 2 or 3 tumors? or was that just one.  If it was all 3, I am very happy for you.  Never heard of just inflammation before, but I suppose it could be possible that interferon crossed the blood/brain barrier and took care of whatever was in his head.  Very happy for you.  The only other case I heard of like this was the Lance Armstong story (he had a craniotomy after chemotherapy, only to find only dead tumor)  Wishing you the best-and tell your hubby to start training for the Tour de France, now that Lance is no longer a major competitor, we need another American to win.

                                  Best 
                                  John

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                                    Jaime.30
                                    Participant

                                      Hello thank you for the reply.  It was all 2-3.  They were a clustering.  Actually the same Dr. that did Lance Armstrong brain tumors also did my husbands surgery….Dr. Shapiro.  My husband is treated at Wishard and Indiana University.  When they came out when the surgery was complete  Dr. Kim, who was assisting, said we do not want to get your hopes up until after pathology comes back but the first thing that Dr. Shapiro said once they found the exact location using the stealth and got him all opened up was there is no melanoma in here.  They are getting together with the radiology Oncologist to see if perhaps when Eston had his radiation of the ear and spit gland area, because the positive node was found in the removed spit gland, if maybe the radiation may have touched into the brain in that are because it was very close to the primary site on the ear.  Take care Jaime

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                                      Jaime.30
                                      Participant

                                        Hello thank you for the reply.  It was all 2-3.  They were a clustering.  Actually the same Dr. that did Lance Armstrong brain tumors also did my husbands surgery….Dr. Shapiro.  My husband is treated at Wishard and Indiana University.  When they came out when the surgery was complete  Dr. Kim, who was assisting, said we do not want to get your hopes up until after pathology comes back but the first thing that Dr. Shapiro said once they found the exact location using the stealth and got him all opened up was there is no melanoma in here.  They are getting together with the radiology Oncologist to see if perhaps when Eston had his radiation of the ear and spit gland area, because the positive node was found in the removed spit gland, if maybe the radiation may have touched into the brain in that are because it was very close to the primary site on the ear.  Take care Jaime

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                                      jag
                                      Participant

                                        Was the ping pong area all 2 or 3 tumors? or was that just one.  If it was all 3, I am very happy for you.  Never heard of just inflammation before, but I suppose it could be possible that interferon crossed the blood/brain barrier and took care of whatever was in his head.  Very happy for you.  The only other case I heard of like this was the Lance Armstong story (he had a craniotomy after chemotherapy, only to find only dead tumor)  Wishing you the best-and tell your hubby to start training for the Tour de France, now that Lance is no longer a major competitor, we need another American to win.

                                        Best 
                                        John

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