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PET scan results – now what?
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PET scan results – now what?

› Forums › Cutaneous Melanoma Community › PET scan results – now what?

  • Post
    • April 3, 2017 at 3:17 pm
    Christine.P
    Participant

      It seems I've been asking a lot of questions lately and I'm so glad you all are here to lean on. 

      I just found out that my cancer has spread (primary tumor was lower right calf (2015) and I just recently had a new tumor removed from just above that area). The report said there are multiple new cutaneous and subcutaneous lesions in my calf, thigh, hip, and lower right back. Intense uptake also reported. 

      My question is this. If the lesions were in an internal organ, would the report state that? I'm wondering specifically about the lesions in my lower back. Does the PET scan specifically identify if the lesion is in an organ or are there more tests that need to be done for that? 

      I don't know what is next. I completed 3 rounds of ipi/nivo and have been on just nivo for about 9 months since the combo. Are there other drugs to try now or will I need to find a clinical trial? 

      Thanks for your support. I am scared.

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    • Replies
        • April 3, 2017 at 3:43 pm
        jennunicorn
        Participant

          Yes, if they were on any organs the report would mention the specific organ. Are you BRAF+? If so, then perhaps trying target therapy would be the next step. If not, then you might look for a trial with some newer drug combinations that are going on. Or seeing if you can try T-VEC or some other intralesional injection approach along with staying on Nivo. 

          • April 4, 2017 at 1:21 pm
          UBContributor
          Participant

            Christine, I have nothing to offer you in trms of knowledge but am wishing  you to find best treatment option. Can you tell me what was ur stage at Dx? how you were followed up? I am Ic, inital spot was above right calf. So what I shiuld be vigilant about?  I am not being followed by MM specialist, and the initial biopcy is sub-standard….All I can do now is reading here. 

             

            • April 5, 2017 at 12:00 am
            Bubbles
            Participant

              I'm not real clear on what your scan is showing…however, if you are developing progressive sub-q lesions while on the combo perhaps it is time to change to….or add….an intralesional…of which there are many:       T-VEC, PV10, etc.  Here is a link to a boatload of reports:  http://chaoticallypreciselifeloveandmelanoma.blogspot.com/search?q=intralesional&max-results=20&by-date=true  

              Hope that helps.  I wish you well.  Celeste

                • April 6, 2017 at 2:03 pm
                Christine.P
                Participant

                  Thank you, Celeste. I just met with my oncologist yesterday and she told me there are four new tumors – in my right calf, thigh, hip, and lower back. We are now doing the genomic testing on this tumor that wasn't done (except for BRAF) with my previous oncologist at another hospital. (Providence, RI) Then, she says based on the results, we will find a trial that is the best fit. 

                  I have to confess that I feel like a trial is kind of a "last resort" and am feeling a little scared and overwhelmed. But the fight continues…

                  • April 6, 2017 at 5:11 pm
                  Bubbles
                  Participant

                    I think that sounds like a good plan, Christine.  We are learning that there are many cases in which it is important to me more specific with melanoma than just calling it 'melanoma'.  This post gives you a diagram that may help explain where you are after your testing is done:  http://chaoticallypreciselifeloveandmelanoma.blogspot.com/2017/03/what-tangled-paths-we-weave-nilotinib.html  

                    Additionally, I would still probably ask about intralesional therapy as an option depending on what your testing shows.

                    I wish you well.  celeste

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