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.

Newyly Diagnosed, looking for answers

Forums General Melanoma Community Newyly Diagnosed, looking for answers

  • Post
    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 

     

    Loading spinner
Viewing 5 reply threads
  • Replies
      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

      Loading spinner
      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

      Loading spinner
      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

      Loading spinner
      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

      Loading spinner
      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.

      Loading spinner
      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.

      Loading spinner
Viewing 5 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.