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Round 2 for us, Need help.

Forums Cutaneous Melanoma Community Round 2 for us, Need help.

  • Post
    Jewel
    Participant

      I have been coming to this board since Nov 2010 when my husband was first diagnosed with melanoma. Lower left calf Nodular, 3.6mm, Clark Level IV, >10 per high power field, Vertical growth present, Vascular invasion present, Microsatellites present. He had a WLE with clear margins. Oncologist chose NOT to do a LND due to the fact that he feels it does not improve OS. We chose to watch and wait because my husband likes the idea of keeping his immune system strong.

      I have been coming to this board since Nov 2010 when my husband was first diagnosed with melanoma. Lower left calf Nodular, 3.6mm, Clark Level IV, >10 per high power field, Vertical growth present, Vascular invasion present, Microsatellites present. He had a WLE with clear margins. Oncologist chose NOT to do a LND due to the fact that he feels it does not improve OS. We chose to watch and wait because my husband likes the idea of keeping his immune system strong. Did normal protocal when in June of 2011 when he was having Hip Resurfacing performed I noticed in the hospital that he had some new spots on his original site. Fast forward to July and they discovered that he had 3 local recurrances in the original site, after a PET scan and 2 MRI one on the brain and one on his leg it is showing only in the same original spot. He also has one node that showed up on his left groin. We are now scheduled to have another WLE performed with a skin graft and a LND. Our Dr said that they prefer not to just needle the node due to fear of spill. Now I asked our ocologist about treatment, and he said he was pretty sure that my husband could be "cured" again. We all know deep down what that means. My husband and I are from the Adirondacks and my husband is comfortable with our regular oncologist and doesn't want to change. My husband is incredibly optomistic and always has been….he knows he has cancer….but refuses to let it run his life.

      What should we be doing different?

      Thanks to all of you, you are all so incredibly brave and strong!!!

      Best wishes

      Cammy& (Ken)

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    • Replies
        Jewel
        Participant

          I'm sorry I also forgot to add that heis BRAF positive and CK20 Negative…thanks

          Jewel
          Participant

            I'm sorry I also forgot to add that heis BRAF positive and CK20 Negative…thanks

              Phil S
              Participant
                You haven’t indicated if you have had his medical records reviewed at a melanoma center. We are from Saratoga NY area, and when my husband was diagnosed we went to both Sloan Kettering and Dana Farber. I know that from where you live it’s a haul to drive, but I personally wouldn’t feel comfortable in your situation, relying on local doctors. Melanoma treatments are changing daily, and you need contact with a melanoma center. Plus, I would worry that any doctor said the word “cured”. Our local oncologist is wonderful, but he knows that we also go to Dana Farber and he is a part of our plan. Good luck to you and your husband, and welcome to the board, wonderful source of information. Valerie (Phil’s wife)
                Phil S
                Participant
                  You haven’t indicated if you have had his medical records reviewed at a melanoma center. We are from Saratoga NY area, and when my husband was diagnosed we went to both Sloan Kettering and Dana Farber. I know that from where you live it’s a haul to drive, but I personally wouldn’t feel comfortable in your situation, relying on local doctors. Melanoma treatments are changing daily, and you need contact with a melanoma center. Plus, I would worry that any doctor said the word “cured”. Our local oncologist is wonderful, but he knows that we also go to Dana Farber and he is a part of our plan. Good luck to you and your husband, and welcome to the board, wonderful source of information. Valerie (Phil’s wife)
                  Vermont_Donna
                  Participant

                    Hi,

                    I too had my original melanoma on my lower calf but on my right leg. I had a positive sentinal node and opted to do the LND, which was negative. You can read my profile for my extensive 5 year history with melanoma and various treatments. I have several suggestions…..consult with a melanoma oncologist…that is crucial….and better yet, have that melanoma oncologist direct your husbands care and if needed, you can see a local oncologist for logistics sake but the treatments needed may not be available locally either. You may need to go to a major medical center. I dont know who is available in Burlington VT at Fletcher Allen Medical Center. Although I am from Vermont I go to Dartmouth Hitchcock Medical Center in Lebanon NH. My melanoma oncologist there is Dr Marc Ernstoff, and I have a team of medical staff who are melanoma experts at this point. There are places to go in NY State…..again we dont know where you are closest to. Keeping a strong immune system by eating well, and keeping a positive attitude are all good things but melanoma is a scary beast. Your husband has had re-occurences, and you need to really look at the bigger picture. Many people travel for their treatment and some have moved to be closer to a facility they want care from. I know, drastic right? But a necessary choice for some. I drive 90 miles one way for treatment. My appointments take most of the day, with scans and labs, and meeting the oncologist. But I do what I need to do to fight this beast.

                    Please write me if you want any more specific information. I may be able to see if my oncologist knows if there is anyone he would recommend in Burlington VT.

                    Vermont_Donna, stage 3a, NED

                    Vermont_Donna
                    Participant

                      Hi,

                      I too had my original melanoma on my lower calf but on my right leg. I had a positive sentinal node and opted to do the LND, which was negative. You can read my profile for my extensive 5 year history with melanoma and various treatments. I have several suggestions…..consult with a melanoma oncologist…that is crucial….and better yet, have that melanoma oncologist direct your husbands care and if needed, you can see a local oncologist for logistics sake but the treatments needed may not be available locally either. You may need to go to a major medical center. I dont know who is available in Burlington VT at Fletcher Allen Medical Center. Although I am from Vermont I go to Dartmouth Hitchcock Medical Center in Lebanon NH. My melanoma oncologist there is Dr Marc Ernstoff, and I have a team of medical staff who are melanoma experts at this point. There are places to go in NY State…..again we dont know where you are closest to. Keeping a strong immune system by eating well, and keeping a positive attitude are all good things but melanoma is a scary beast. Your husband has had re-occurences, and you need to really look at the bigger picture. Many people travel for their treatment and some have moved to be closer to a facility they want care from. I know, drastic right? But a necessary choice for some. I drive 90 miles one way for treatment. My appointments take most of the day, with scans and labs, and meeting the oncologist. But I do what I need to do to fight this beast.

                      Please write me if you want any more specific information. I may be able to see if my oncologist knows if there is anyone he would recommend in Burlington VT.

                      Vermont_Donna, stage 3a, NED

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