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Lung Mets progression after one ipi/nivo?
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Lung Mets progression after one ipi/nivo?

› Forums › General Melanoma Community › Lung Mets progression after one ipi/nivo?

  • Post
    • March 18, 2021 at 6:22 pm
    KrossCanada
    Participant
      Hi everyone,

      I posted a while back when I had extreme headaches week two after my first ipi/nivo. I ended up in hospital for 12 days with immunotherapy induced meningitis. I have have been weaning off 80mg of prednisone since then and treatment on hold. I’m staying on 10 mg prednisone for time being and had scans last week. It has been three months since my first ipi/nivo and my scans show extensive growth in lung mets and lymph nodes.
      I will be seeing oncologist next week for next steps. I’m feeling very anxious that ipi/nivo wasn’t successful, so then nivo on its own likely won’t work either.
      Has anyone had no success on ipi/nivo but success with nivo alone or another treatment?

    Viewing 2 reply threads
    • Replies
        • March 20, 2021 at 8:37 pm
        Ireland1
        Participant
          I am new to the forum and await some of the experienced contributors input.  I just wanted to wish you well next week – you’ve had such a rough road.  As you were only able to get one ipi/nivo treatment – I wonder is it hard to assess how you may have responded with more – and rather than a treatment failure you just need a chance now at a sustained treatment (such as nivo alone) to give you a chance to respond hopefully.  I hope you have a good consultation this week.
            • March 21, 2021 at 8:25 am
            KrossCanada
            Participant
              Thank you so much for your response. I’m trying to remain hopeful that treatment will work but I was shocked with the growth. Waiting for next steps is hard. I’m thinking stereotactic ablative radiotherapy (SABR) might be an option now as well.
            • March 22, 2021 at 9:46 am
            hxcadam
            Participant
              I have not experienced the combo yet but with just nivo alone paired with radiation I saw good shrinkage to 2 lung mets.  I did see progression however to other sites and was put on Taf/Mek.  It’s been about a year since the nivo/radiation was originally given and my last CT scan in Jan. said this:

               

              Lungs/Airways: Radiation-induced changes in left lower lobe, unchanged. Bilateral calcified granulomas.  No suspicious lung nodules seen.

              Which I think means that they’re gone.

               

               

                • March 22, 2021 at 1:08 pm
                KrossCanada
                Participant
                  Thank you so much for your reply. Can I ask what size were your two lung Mets?
                  This is helping keep me hopeful! ❤️
                  • March 23, 2021 at 11:08 am
                  hxcadam
                  Participant
                    PET Scan from 7/19 said this which my doctor either missed or didn’t tell me about and at that point I was on the NED high and wasn’t going over my own reports like an idiot:

                    Lungs/Airways:  No abnormal uptake.  Left lower lobe 0.7mm lung nodule image 192, at the limits of PET resolution, subtly demonstrated in 1/2019.

                     

                    CT scan from 1/20 when they officially told me I was stage 4:

                     

                    Lungs/Airways:  Multiple bilateral calcified granulomas.  New 1.2 x 1.1 cm left lower lobe met in the posterior costophrenic angle and 1.9 x 1.8 cm left lower lobe perihilar met.

                     

                  • March 23, 2021 at 2:35 pm
                  KrossCanada
                  Participant
                    Thanks so much for sharing
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