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Newyly Diagnosed, looking for answers
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Newyly Diagnosed, looking for answers

› Forums › General Melanoma Community › Newyly Diagnosed, looking for answers

  • Post
    • March 13, 2011 at 3:46 pm
    Lisa13
    Participant

      I've recently had a wide local excision as well as the superficial lymph nodes removed from my right groin. 1 has tested postive for cancer, 1 other was very enlarged since my immunity was fighting the cancer and I'm still awaiting the remainder of my pathology report. My melanoma is deep (at least 8mm).

      I've recently had a wide local excision as well as the superficial lymph nodes removed from my right groin. 1 has tested postive for cancer, 1 other was very enlarged since my immunity was fighting the cancer and I'm still awaiting the remainder of my pathology report. My melanoma is deep (at least 8mm). PET scans show NED, but I'm high risk for re-occrurance.  That being said, I'm researching high dose Interferon and clinical trials using ipillmumab and a vaccine hoping to keep this away for as long as possible.  I'm also meeting with a naturopath next week

      Is there anyone whose had a deep melanoma and lymph node involvement who've done any of these treatments and feel it's been beneficial?  My oncologist doesn't think Interferon is worth the side effects for the low benefit it's claimed to have.  I have a 16 month old daughter, so I feel I need to do whatever I can do keep this away for as long as possible, or until a fabulous drug becomes available that gives Stage 3 a much better prognosis in life.

      Thanks,

      Lisa 

       

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    • Replies
        • March 13, 2011 at 7:17 pm
        RMcLegal
        Participant

          Lisa, I was diagnosed Stage IIIc (14 malignant nodes) in 2003 and underwent biochemotherapy (which includes interferon) at the University of Colorado Cancer Center.  Today, I'm still healthy and NED.  I've blogged about my long, strange trip at http://www.hotelmelanoma.blogspot.com.

          My advice is to see an oncologist who specializes in melanoma treatment and check out all of your treatment options, including clinical trials.  Sounds like you have a lot to live for, so take your best shot at avoiding a recurrence!  Best wishes.  Rich

          • March 13, 2011 at 7:17 pm
          RMcLegal
          Participant

            Lisa, I was diagnosed Stage IIIc (14 malignant nodes) in 2003 and underwent biochemotherapy (which includes interferon) at the University of Colorado Cancer Center.  Today, I'm still healthy and NED.  I've blogged about my long, strange trip at http://www.hotelmelanoma.blogspot.com.

            My advice is to see an oncologist who specializes in melanoma treatment and check out all of your treatment options, including clinical trials.  Sounds like you have a lot to live for, so take your best shot at avoiding a recurrence!  Best wishes.  Rich

            • March 13, 2011 at 9:17 pm
            Carver
            Participant

              We have a pretty similar situation except my daughter was in college when I was diagnosed so although as a mother I still felt she was young it wasn't like having a toddler like you do. I decided not to do interferon and didn't look into clinical trials until I was too far out from surgery to qualify in most cases. I have gone 6 years now without a recurrence. If you click on my name it should take you to my history but the bottom line is in spite of some scares I haven't recurred. In your situation I probably would seriously consider clinical trials but everyone is different. I have been lucky and without treatiment beyond the lymph node dissection I'm doing well.

               

              Best of luck, Carver

              • March 13, 2011 at 9:17 pm
              Carver
              Participant

                We have a pretty similar situation except my daughter was in college when I was diagnosed so although as a mother I still felt she was young it wasn't like having a toddler like you do. I decided not to do interferon and didn't look into clinical trials until I was too far out from surgery to qualify in most cases. I have gone 6 years now without a recurrence. If you click on my name it should take you to my history but the bottom line is in spite of some scares I haven't recurred. In your situation I probably would seriously consider clinical trials but everyone is different. I have been lucky and without treatiment beyond the lymph node dissection I'm doing well.

                 

                Best of luck, Carver

                • March 13, 2011 at 9:27 pm
                Erica A
                Participant

                  My husband had a very large and deep melanoma.  Originally no lymph node involvement but it spread to nodes within 3 months.  He started interferon, but the melanoma continued to spread and grow while on it.  He eventually went stage IV and did bio-chemo.  He has been NED for almost 6 years now.  Because your melanoma is large, I would ask what typical stage IV treatments might be available.  In retrospect, I would have chosen to be more agressive sooner with my husband.  Have hope though – know that there are people out there that beat stage III and IV.

                  • March 13, 2011 at 9:27 pm
                  Erica A
                  Participant

                    My husband had a very large and deep melanoma.  Originally no lymph node involvement but it spread to nodes within 3 months.  He started interferon, but the melanoma continued to spread and grow while on it.  He eventually went stage IV and did bio-chemo.  He has been NED for almost 6 years now.  Because your melanoma is large, I would ask what typical stage IV treatments might be available.  In retrospect, I would have chosen to be more agressive sooner with my husband.  Have hope though – know that there are people out there that beat stage III and IV.

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