Home Forums Newly Diagnosed Stage III/IV stage 3B-HELP

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  • #21951
    jennyedwards
    Participant

    My husband was recently diagnosed with stage 3B-melanoma.. We noticed a pink cyst like lump at the base of his neck in November 2013. After much discussion-he had it removed only to find the answer that has changed our lives. (no color melanoma measuring 1.5 x 1.1 x .8cm with a lesion depth of 9mm). We immediately had many doctor checks to see if we could find a primary site but to no avail. In December 2013, had the tumor successfully removed and a SNB. Lymph node was clear. Results of PET scan were also clear. In March 2014, we found another spot (melanoma) on the skin surface that was removed with clear margins. We were told this may perhaps be an “in transit” spot. At the present time, we are waiting on results of BRAF mutation test.

    Where do we go from here? We have been told that there are many clinical trials that we may quailfy for. As I have researched the trials– I am finding out about T-VEC and also hearing the words Yervoy and Interferon.. Of course, the medication side effects seem horrible.. I am asking for advice on the drug treatments and also clinical trials.. HELP– feeling overwhelmed and confused.

    #64269
    Catherine Poole
    Keymaster

    I’m a little confused, if the melanoma had no color, then it was an amelanotic melanoma and that pink cyst was the primary. This would not be an intransit melanoma. If the SLNB was clear, then he would be 3A. The only trials are very limited for stage III. Watch and wait is a simple yet aggressive approach. I would make sure you are going to a center of melanoma excellence though. Possibly getting another opinion on the pathology is in order too. Where is he being treated?

    #64270
    jennyedwards
    Participant

    Catherine,

    It is no wonder you are confused because I am totally confused. Will you send me your email and I will forward you the path reports.

    #64271
    Catherine Poole
    Keymaster
    #64272
    Linny
    Participant

    I can see why you’re confused.

    I’m wondering why the pink cyst-like lump wasn’t considered a melanoma as well as the primary site? Melanomas don’t have to be black.

    I see you’ve contacted Catherine and I know she’ll be able to point you in the right direction.

    Only things I can add is to make sure your hubby is being seen at a melanoma “center of excellence” as opposed to a generic cancer center. Also, getting a second opinion never hurts.

    #64273
    Catherine Poole
    Keymaster

    Jenny,

    I haven’t received your path reports yet. I’m here to help!

    #64274
    jennyedwards
    Participant

    Catherine,

    I have emailed you the results I have to date. We are waiting on the BRAF test to be completed. Please let me know if you have any feedback.

    Thanks,

    Jenny

    #64275
    goldfidler
    Participant

    I simply want to echo some comments already made. I am Stage 3c, currently NED (No Evidence of Disease). I had a tumor removed from my foot, the SNB, and the groin dissection. I am taking the Watch and Wait approach, as there are not many options with trials for Stage 3. There are many more options for Stage 2 and Stage 4.

    – Make sure you are going to a good melanoma specialist, not just to a cancer center. It makes a big difference.

    – Your results, based on your comments, are confusing. As was stated, your description is a Stage 3a not a 3b.

    – This forum was a tremendous source of experience, advice, and support for me. I was diagnosed in June 2013. Without this group of caring people, I would have been a complete basket case. I am forever thankful to this forum and these people. Catherine Poole is wonderful.

    – Stay strong and fight. Don’t give up. We are here to help and support you.

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