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Not Good News
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Not Good News

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  • Post
    • June 2, 2017 at 1:05 am
    Shannon B
    Participant

      We met with Willie's new medical oncologist today and got the results of his MRI and PEt scans yesterday. Good news- no brain mets. Bad news, loads of places lite up. Liver, spleen, femur, bone in right shoulder, spots on ribs, lymph node areas all over. Possibly small spots in lungs. Dr. says that since lymph node under L arm tested positive for Melanoma that they are sure that is what all the spots are. 10 years ago his other oncologist said he didn't like PET scans, too many false positves. I guess my question is, should I hold out some hope that these spots aren't melanoma and request they do CT's. BRAF negative so he is going to start ipi/nivo next week.

      Shannon- Willie's wife.

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        • June 2, 2017 at 2:00 am
        Ridingaroundwith27Jennifers
        Participant

          Hi Shannon,

          I'm sorry for your news.  I'm stage IV melanoma and have had two brain mets respond to ipi/nivo (only two treatments) and one which did not.  I've only had CT scans.  I'm getting treatment at Dana Farber and the team has been amazing.  I am hoping Willie has false positives and not really so much metastisis.  I am hoping he responds well to the treatment and that he doesn't have side effects.

          Jennifer

          • June 2, 2017 at 3:55 am
          jennunicorn
          Participant

            PET scans show metabolic activity and because of that false positives can happen. My body personally really likes to confuse radiologists on PET results because all sorts of stuff will light up sometimes, but when compared to the CT scan taken at the same time most of the lighting up stuff is considered reactive and not cancer. A CT scan will show size. I get PET/CT combo scans, it's the standard where I go at UCSF. They can then compare if something is lighting up on the PET to see if it's showing elargement or as a mass on the CT. At the next scan it's also easier to compare if something has grown in size or not. So, I would say asking for a CT with and without contrast wouldn't be a bad idea. All treatment centers do scans a little differently, but I would definitely want to know what the sizes of these spots are and what they look like on a CT. Ipi/Nivo has done great things for many and I hope it is the ticket for your husband. 

            All the best,

              • June 3, 2017 at 3:08 am
              Shannon B
              Participant

                Thanks for the info! Did you manage all 4 combo treatments?

                • June 3, 2017 at 4:18 am
                jennunicorn
                Participant

                  I did, and I actually did 6 higher dose Ipi infusions before going on the combo with no major side effects.. but, since the Ipi alone didn't keep the mel away, then I went for the combo, got through all 4 ok. After the 4th combo dose I had a 2 week fever and felt pretty awful, but it went away and I haven't dealt with any major side effects since being on Nivo alone. My next scan is coming up soon and I'm feeling hopeful the combo has kicked it to the curb.

                  • June 3, 2017 at 1:34 pm
                  Shannon B
                  Participant

                    Willie has had fever and flu like symptoms for almost 5 weeks now without treatments so that won't be any different for him!

                  • June 4, 2017 at 4:11 pm
                  Patrisa
                  Participant

                    Dear Shannon,

                    good news that his brain is clear… Good news as well that he will be on combo, it is his best shot at beating this…..

                    Will be praying for a great response!

                    take care,

                    Patrisa

                     

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