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What would you do if you were me?
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What would you do if you were me?

› Forums › General Melanoma Community › What would you do if you were me?

  • Post
    • April 7, 2017 at 7:02 pm
    MichelleRHG
    Participant
      After 2 recent surgeries to remove cancerous lymph nodes I started ipi as adjuvant tx. After 2 infusions I started feeling anxious and asked for a PET scan, which showed 3 new spots in exact area of last bad node that was 45mm and with extracapsular extension when it was removed in January. All 3 spots have SUV between 4 and 5.
      Local onc called my MDAnderson onc who recommended continuing on ipi and rescan in 4-6 weeks. It’s about 3 months post op so she thinks it could be reactive from surgery.
      If you look at my profile you’ll see this was a very fast growing tumor. After a good discussion with local onc he agreed to go with the ipi/nivo and start next week . (I assume insurance will pay since I have 3 new spots in exact location of my “ruptured” node)
      My local guy is NOT a melanoma specialist but is willing to be as aggressive as I want.
      Is it bad to go against my MDA onc? Sitting around waiting for it to grow while getting a treatment of ipi which has much lower success rate is not my cup of tea .
      Would love input from you guys!!
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    • Replies
        • April 7, 2017 at 7:38 pm
        jennunicorn
        Participant

          That is incredibly soon to scan after starting treatment, and I'm a little surprised you were covered by insurance for it. It could be lighting up because of surgery or it could be lighting up because the Ipi has caused it to inflame and become reactive. I've had areas all over light up with SUVs between 3-5. They come and go, it's all been mostly thought to be because of the drugs, haven't poked everything that has lit up, so we can't be certain, one area that continues to show 4.6 SUV every time has been tested and was negative. But, with that said, if your insurance will cover Ipi/Nivo, then go for it. It made a world of difference for me to go on Ipi/Nivo after trying Ipi 10mg. I know you have to have active cancer and be considered "unresectable" stage 3 to get it approved by insurance, so if that's the case with you then it should be covered. 

          All the best,

            • April 7, 2017 at 7:45 pm
            MichelleRHG
            Participant
              My last PET was in December so I thought it was time. Not really to check on the tx but because that node was so terrible I they wouldn’t do radiation. Hoping my tx is as successful as yours Thanks for your reply!
            • April 8, 2017 at 1:54 pm
            Gene_S
            Participant

              If you guy is not a melanoma specialist I hope he is working closely with MDA as side effects by an unexperienced onc with IPI is not where I would want to be.

                • April 8, 2017 at 9:39 pm
                MichelleRHG
                Participant
                  They are communicating and the side effect treatment protocols are published and local guy has access to them. There is not a mel specialist in my state !
                  Thanks for replying.
                • April 8, 2017 at 9:16 pm
                BrianP
                Participant

                  Michelle,

                  That's a tough one.  Here's some of my thoughts.  I don't think you've given Ipi much time to do it's thing.  I remember a study some time ago and I think the average time for seeing a response from ipi was 12 weeks or longer.  Staying on ipi and doing another scan in 6 weeks is a reasonable option.  I didn't quite understand your radiation reply.  If you haven't done radiation you might consider adding that.  We know by itself radiation is not much good but in conjuction with immunotherapy it may be a worthwhile consideration. 

                  I never would fault someone for going with the most aggresive treatment available to them.  This shit is scary and you got to do what you think is right but sitting on my couch and thinking about it in an objective manner I think giving ipi 6 more weeks is a reasonable option.

                    • April 8, 2017 at 9:37 pm
                    MichelleRHG
                    Participant
                      Thanks, Brian. Yes I see that my radiation sentence does not make sense. Nobody will radiate the area bc its in my groin/pelvic area. Based on the condition of last node MDA said radiation would be appropriate if it were a different area.
                      I do understand ipi takes a while to kick in and do its thing . As you are probably aware, panic sets in when they tell you 3 new spots. Switching to the combo may be a moot point if insurance says no. Thanks again for your thoughtful input.
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