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Acral Lentiginous – Newly Diagnosed & Looking for 2nd Opinion recs

Forums Cutaneous Melanoma Community Acral Lentiginous – Newly Diagnosed & Looking for 2nd Opinion recs

  • Post
    h23b4s
    Participant
      Hello,
      My husband was diagnosed with ALM on fingertip in late January. Initial diagnosis by surgery onc was a thin melanoma with 95% chance early stage. Surgery to amputate finger tip and SLNB was done 4 weeks later and just informed that axillary lymph node has a .5mm spot. PET/CET scheduled for next week to confirm stage.

      We are trying to deal with sudden change in initial diagnoses and all the waiting first with surgery and now with additional testing. Keep reading how ALM can spread within weeks so really concerned with how long all of this is taking. We want to get a second opinion and looking for the following guidance:

      1) Do you have any recommendations for oncologists that specialize in ALM, genetic testing and best options for immunotherapy? Current onc is doing BRAF but from what I’ve read, BRAF is not typical with ALM so think we may need more. I’ve heard Dr. Jeff Weber recommended by others here. What about MD Anderson, Moffitt or Mayo?

      2) Is it ok to do self referral? We really don’t want to wait another week before taking some action

      3) Has anyone had a second pathology review?

      Thank you, thank you for any guidance you may have. I’m so grateful to have this community to share information.

      All the best,
      HBS

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    • Replies
        Bubbles
        Participant
          Hi HBS,

          Sorry for what you and your husband are facing.  Here is a link to many articles regarding acral melanoma that you may find helpful – https://chaoticallypreciselifeloveandmelanoma.blogspot.com/search?q=acral&max-results=20&by-date=true

          In melanoma, or any other disease really, we all have to advocate for ourselves and getting a second opinion never hurts.  I don’t know that you will find a specialist in acral melanoma per se, however, an oncologist who specializes in melanoma could be very beneficial.  Here is a (not all encompassing) list of melanoma specialists that I put together for peeps in need – https://chaoticallypreciselifeloveandmelanoma.blogspot.com/2019/10/internationally-renowned-melanoma.html

          I am partial to Dr. Weber as he was my physician, however, I would not hesitate to see any on this list.  I would simply roll with the one nearest to me geographically.  Hope that helps.  Wishing you both my best.  Celeste

            h23b4s
            Participant
              Hi Celeste, thanks so much for taking the time to respond. The information you provided is extremely helpful and exactly what I was hoping for. I’ve put in a call to MD Anderson and am trying to get an appt with Dr. Tawbi. Finders crossed. So very thankful for you and Ellen and so many others here for sharing your stories, experiences and guidance. Hugs, Heidi

            Ellenb626
            Participant
              Hi HBS,

              After I was diagnosed with melanoma, I called Memorial Sloan Kettering and arranged to have all the information they needed- pathology and ct scans sent there.  They looked at the information I submitted and made an appointment with the surgeon.  I   I would call which ever institution you are considering ask them what information they need, send it to them and go with a whole list of questions.

              Good luck.

              Ellen

                h23b4s
                Participant
                  Hi Ellen,

                  Thank you so much for replying. It’s what I needed to make the initial call to MD Anderson today. Thanks again for your guidance! Heidi

                Lucas
                Participant
                  I had a very thick acral melanoma on my heel in 2016. It spread to one popliteal lymph node with a 4mm deposit. It took one year for it to recur locally and 2 years for a distant metastasis. A melanoma specialist would also be an acral specialist as for now they are treated the same. I would assume he will have the option of being treated with immunotherapy for one year. In my case with very aggressive disease I failed the adjuvant treatment but would later have a complete response to the combo of IPI/NIVO. I think he has great options however all the literature on acral melanoma can be very scary and overwhelming.
                    h23b4s
                    Participant
                      Hi Lucas, you’re so right – reading all the papers and research on it can be overwhelming. It’s a fine line between knowing enough and knowing too much sometimes; that said we feel lucky to have access to it. Thank you so much for sharing your story with me. Hearing from all of you, your experiences and guidance is the best therapy tbh. Can’t overstate how grateful I am that you and others are still helping others that are just starting their journeys. And, I’m so glad you had such a good response on IPI/NIVO – that’s amazing! Gives us much hope.

                      We await the PET/CT and are working to schedule appt to get second opinion. Hope to have some answers and a way forward soon. Until then, I hope you’re doing well and thank you again for all of your help.

                      Heidi

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