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Confused, Scared and looking for Help on Scans
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Confused, Scared and looking for Help on Scans

› Forums › General Melanoma Community › Confused, Scared and looking for Help on Scans

  • Post
    • August 1, 2020 at 1:24 am
    THMoore
    Participant
      I just received my CT scan report today at MDA. I was stage 3B with 5 new active nodes in my neck. I have been on Opdivo for 3 treatments. The nodes have decreased and are no longer active on the PET. But now the CT shows small nodules in my lungs, all about 5MM. In BC addition, I now have a 2 CM mass in my liver. Had a PET scan this afternoon, and it showed nodules on the neck as smaller and inactive. The nodules in my lungs are inactive, but the 2 CM in my liver is active. I am trying to make sense of this. Seems like the Opdivo is working, but I also have more spots. I will be meeting with the oncologist in 10 days, but was really wanting some advice or encouragement. Thanks e everyone. Trent.
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        • August 1, 2020 at 11:50 am
        tkoss
        Participant
          I am 6 months in to opvido. no new mets. LN only involved originally.

          i have been told or to better put it in most conversations it was suggested that Opvido takes time to become effective. maybe 3-4 months.

          • August 1, 2020 at 3:26 pm
          Bubbles
          Participant
            Sorry, Trent. Obviously all we want to hear about our scans is that they are CLEAR!!!!!!!!!!!!!!! Still, it is really good news that the nodes in your neck are definitely smaller and categorized as “inactive” and the “nodules” in your lung are “inactive” as well. (Immunotherapy can cause some funky responses in the lungs, causing “nodules” or a “ground glass” appearance on films due to debris and inflammation.) As far as the liver – I’m sure your MDA docs will compare these films with the ones you had in May (both PET and CT) and that may give them important information. Many things can “light up” on a PET that has nothing to do with cancer. Livers can have lots of cysts that under normal circumstances, develop and resolve without our knowing. Still, a cold metastasis can turn “hot” during immunotherapy as its start toward resolution – which might be what is being shown here. If that is what your docs think is going on, they may simply want you to continue Opdivo and do another follow-up scan to see where things are in a couple of months. If it is a non-responsive metastasis, then it might be surgically removable or dealt with by isolated hepatic perfusion treatments.

            BTW – I posted some reports on your mutation and targeted therapy here: https://melanoma.org/legacy/find-support/patient-community/mpip-melanoma-patients-information-page/k601e-braf-mutation

            On another hopeful note, this post may give you encouragement: https://melanoma.org/legacy/find-support/patient-community/mpip-melanoma-patients-information-page/be-patient-patient

            I’m sure your meeting with your docs next week will help you formulate a good plan for going forward. I wish you my best. Celeste

              • August 1, 2020 at 3:53 pm
              THMoore
              Participant
                Miss Bubbles you need to know how much we appreciate your caring and responses. We are all scared and you always seem to bring normality back to us. As for my scans, 10 weeks ago, there were no findings in the CT, MRI or PET other then the nodes in my neck. Now the nodes do show shrinkage, but the new nodules in my lungs are around 6MM in both lungs. The PET shows them as inactive. The tumor in my liver is also new. It is 2CM and shows active in the PET. The CT didn’t show tumors in the brain but I am having pain behind my ear and it’s causing headaches. Forgot to tell the doctors so now they want a MRI. It’s only been 10 weeks since my last tests. Now I’m afraid it’s in my brain to, even though the CT or PET didn’t show anything. I guess I am confused and scared. All the findings are new since my last scan. Some are active and some not. Thx Miss B for listening. Trent
                • August 1, 2020 at 4:15 pm
                Bubbles
                Participant
                  Yes, I understood that your previous scans were reported as clear. The things I mentioned still stand, I think. Even though the prior scans were in fact clear, additional scrutiny by both the radiologist and your onc in light of these new findings, may (or may not) reveal more information. Unfortunately, things in melanoma are about as clear as mud. BUT – we are stronger than mud!!! Hang in there. c
                  • August 1, 2020 at 4:35 pm
                  THMoore
                  Participant
                    ❤️
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