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Returning from our NED vacation
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Returning from our NED vacation

› Forums › General Melanoma Community › Returning from our NED vacation

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    • December 17, 2018 at 5:56 pm
    EricaInMS
    Participant

      A lot has changed since my husband's diagnosis (Stage 3C recurrent, so maybe Stage 4) 16 years ago.  He had been NED since 2005, but now has a tumor and malignant lymph nodes – we should get the results of the biopsy today or tomorrow confirming that it is melanoma (not sure when we will get the BRAF results).  He has a PET scan on the 26th, and we are hoping that there is no melanoma in any internal organs.  He does have a cracked rib adjacent to the tumor – we are unclear how they are related, and he is in a lot of pain with it and it is not healing. We have a follow-up with our local oncologist on Dec 28th to discuss the path forward.

      I'm really excited with all of the treatment options and trials available to us today.  I don't want to move forward with treatment until we meet with a doctor who specializes in melanoma, but that appointment (Dr Parnell at UAB) is not until January 23rd.

      I'm looking for some thoughts/advice as to how we should proceed.  Take the aggressive route and tackle the tumor now?  Or can we wait a month?  With the tumor affecting the rib, I'm not sure I want to wait a month, but many of the trial require a tumor to be measured.  I'm also a little confused as the trials say "inoperable" but also easily measurable with palpatation/ultrasound.  The nodes under his arm meet the easily accessible part, but that also makes them easy to remove.  Not looking forward to the lymphadema that comes with removing the node – we already have that with his leg.

      Thank-you in advance for your help,

      Erica

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    • Replies
        • December 17, 2018 at 7:21 pm
        mandyjill
        Participant

          Just because you have lymph nodes removed doesn't automatically mean you will have to deal with lymphedema.  I had 23 nodes removed from under my right arm and haven't experienced any lymphedema.  Good luck to your husband!

          • December 17, 2018 at 8:57 pm
          Bubbles
          Participant

            Sorry you have to return to melanoma world, but much has changed since 2005.  (I was first diagnosed in 2003!!!)  That said, there are so many treatment options that are now FDA approved that it is unlikely that your husband will need to start with a trial….that yes….often require measureable disease.  Catching up on the latest options will be important for you and your husband.  As a starter, this primer I put together may be of help:

            https://chaoticallypreciselifeloveandmelanoma.blogspot.com/search?q=primer  

            Sorry he had to deal with lymphadema with his first surgery.  However, the other poster is correct that with a sentinel node biopsy, esp in the arm, lymphadema is less likely.  

            Ask more questions as you have the need.  I wish you and your husband my best. Celeste

            • December 18, 2018 at 1:21 am
            WithinMySkin
            Participant

              Hi Erica! So so sorry to hear your husband has rejoined the 'club' – that has to be devistating when things have been clear for so long!!! As you said, there are LOTS of new treatments available in the past 16 years, though, so that's a great thing! (This reminds me of my first oncologist who told me "it's not a great time to have melanoma" when I was diagnosed 3 years ago. Seriously…who says that?!?!?!?! I dropped that guy like a bad habbit!!!!) So many treatments have come out literally in the past few years, and they are available without a trial, which makes treatment easier as well. The PET scan may give some info on how to proceed and if it's spread anywhere, which would help with guiding treatment. And as others have said, removing a couple nodes from the arm area creates less lymphedema than removing lots from the leg area, so hopefully nothing to worry about there. Keep doing your research, keep your head up, and sit tight until the PET scan results are back. Then make the best decision you can with the info you have and trust your gut.

              Lauren

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