The information on this site is not intended or implied to be a substitute for professional medical advice, diagnosis or treatment. Content within the patient forum is user-generated and has not been reviewed by medical professionals. Other sections of the Melanoma Research Foundation website include information that has been reviewed by medical professionals as appropriate. All medical decisions should be made in consultation with your doctor or other qualified medical professional.

Update for CaptAaron

Forums General Melanoma Community Update for CaptAaron

  • Post
    CaptAaron
    Participant

      Good day fellow warriors!  Well I want to reitterate that I'm overwhelmed at the responses I got to my first post.  Everyone had wonderful inputs and I trully appreciate that.  It just sounds like the entire decision is too ambiguous to make it easy on anyone, and the limited evidence supporting Interferon treatment creates another dynamic to our scenario that is also not desirable.  With the misery that ensued last Monday evening, I was at least ready for it on Wed evening when I gave myself the second injection.  Surprisingly, it wasn't bad at al

      Good day fellow warriors!  Well I want to reitterate that I'm overwhelmed at the responses I got to my first post.  Everyone had wonderful inputs and I trully appreciate that.  It just sounds like the entire decision is too ambiguous to make it easy on anyone, and the limited evidence supporting Interferon treatment creates another dynamic to our scenario that is also not desirable.  With the misery that ensued last Monday evening, I was at least ready for it on Wed evening when I gave myself the second injection.  Surprisingly, it wasn't bad at all.  I was a little tired, and a little spacey, but definitely nothing like the first night.  I thought this was a good sign.  My third shot came on Friday evening and again, nothing notable about the experience.  This is good.  As long as my Wed and Fri evening experiences continue, I'll be good to go.

      I still think there's justification for my questioning the staging methodology for melanoma and how it can be better refined to account for the individual afflicted by this disease and not just the statistics.  However, that's not my expertise, and I'm sure there are thousands of doctors and subject mattter experts more qualified than I making those determinations.

      Stay strong warriors!

      Loading spinner
    Viewing 3 reply threads
    • Replies
        killmel
        Participant

          Hi,

           

          Glad to hear things are going well with Interferon. I am curious to know the rationale for your doctor to prescribe Interferon instead of other treatments.Thanks 

          Loading spinner
          killmel
          Participant

            Hi,

             

            Glad to hear things are going well with Interferon. I am curious to know the rationale for your doctor to prescribe Interferon instead of other treatments.Thanks 

            Loading spinner
            dian in spokane
            Participant

              You are right that staging should be more individual, and it is..those staging guidelines have to be done in some kind of scientific way, but each patient should be treating as an individual. It is not always so cut and dried. If you hang around here for a while, you'll see people who can't even get their doctors to give them a stage..because it's ambiguous.

              Using myself as an example. I advanced to stage 3 in 2003 when a lump formed on my arm at the site of a previous melanoma. My SNB was clear, but the surgeon found two satelitte mets when doing the wide excision, which put me at stage 3. Except that the original mel at that site was 'in situ' in 1983. Something that never should have 'spread'

              The staging wasn't as important to me as the treatment at that point, which was interferon, which I did.

              Then in late 2008, I progressed to stage 4 via distant subcutaneous tumors in my left leg.

              Since then I've talked to PLENTY of doctors about staging, and in so doing have discussed the basis of my stage 3 diagnosis back in 03. Two of those docs agree with me that I might have just as easily been stage 4 in 03, maybe was, probably was..for the same reason. If my surgical onc had seen me prior to my dermatologist excision, that tumor in 03 might have been classed as a 'distant subcutaneous tumor', making me stage 4 just like the tumors in 08.

              I'm not sure it matters particularly if I have been stage 4 for two years or 7 yrs. I'm NED! and so are YOU. That's the thing to celebrate and remember. With melanoma, you just have to deal with whatever it throws at you right when it happens. It's ..charlie used to call it 'capricious'. it is definately unpredictable.

              But right now, it is Aaron 1, Melanoma 0.

              OH.. I meant to mention to you that MY first subQ shot after 'boot camp' was hard too. And.. my first shot of every week was always a little bit tougher than the other two. Because of that, I changed my shots to Sunday, Tues, and Thurs. This way.. I had a little rally for the weekend. I had a lot of musical stuff to do on the weekends so it worked out pretty well to have more energy then.

              I had to quit interferon in my 9th month, but probably should have quit in my 6th..since that's when the fatigue and coughing and weight loss really hit it's pinnacle.

              Good luck to you Aaron. Thanks for updating us. I just have a feeling are gonna do GREAT. you have the fighting spirit!

              Dian

              Loading spinner
              dian in spokane
              Participant

                You are right that staging should be more individual, and it is..those staging guidelines have to be done in some kind of scientific way, but each patient should be treating as an individual. It is not always so cut and dried. If you hang around here for a while, you'll see people who can't even get their doctors to give them a stage..because it's ambiguous.

                Using myself as an example. I advanced to stage 3 in 2003 when a lump formed on my arm at the site of a previous melanoma. My SNB was clear, but the surgeon found two satelitte mets when doing the wide excision, which put me at stage 3. Except that the original mel at that site was 'in situ' in 1983. Something that never should have 'spread'

                The staging wasn't as important to me as the treatment at that point, which was interferon, which I did.

                Then in late 2008, I progressed to stage 4 via distant subcutaneous tumors in my left leg.

                Since then I've talked to PLENTY of doctors about staging, and in so doing have discussed the basis of my stage 3 diagnosis back in 03. Two of those docs agree with me that I might have just as easily been stage 4 in 03, maybe was, probably was..for the same reason. If my surgical onc had seen me prior to my dermatologist excision, that tumor in 03 might have been classed as a 'distant subcutaneous tumor', making me stage 4 just like the tumors in 08.

                I'm not sure it matters particularly if I have been stage 4 for two years or 7 yrs. I'm NED! and so are YOU. That's the thing to celebrate and remember. With melanoma, you just have to deal with whatever it throws at you right when it happens. It's ..charlie used to call it 'capricious'. it is definately unpredictable.

                But right now, it is Aaron 1, Melanoma 0.

                OH.. I meant to mention to you that MY first subQ shot after 'boot camp' was hard too. And.. my first shot of every week was always a little bit tougher than the other two. Because of that, I changed my shots to Sunday, Tues, and Thurs. This way.. I had a little rally for the weekend. I had a lot of musical stuff to do on the weekends so it worked out pretty well to have more energy then.

                I had to quit interferon in my 9th month, but probably should have quit in my 6th..since that's when the fatigue and coughing and weight loss really hit it's pinnacle.

                Good luck to you Aaron. Thanks for updating us. I just have a feeling are gonna do GREAT. you have the fighting spirit!

                Dian

                Loading spinner
            Viewing 3 reply threads
            • You must be logged in to reply to this topic.
            About the MRF Patient Forum

            The MRF Patient Forum is the oldest and largest online community of people affected by melanoma. It is designed to provide peer support and information to caregivers, patients, family and friends. There is no better place to discuss different parts of your journey with this cancer and find the friends and support resources to make that journey more bearable.

            The information on the forum is open and accessible to everyone. To add a new topic or to post a reply, you must be a registered user. Please note that you will be able to post both topics and replies anonymously even though you are logged in. All posts must abide by MRF posting policies.