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Scan Results

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  • Post
    • June 13, 2019 at 4:36 pm
    MarkR
    Participant
      Went to see the Dr today to get the MRI & CT results from earlier this week after 3 months on Nivo Mono following progression earlier this year. Some good, but not great results, in that the Lung nodules are ‘stable’.

      He did say there was a very small amount of growth in some but believes that may be some enlargement due to treatment. When I was on Ipi / Nivo my 3 months scans actually showed progression to my lungs (although it wasn’t identified as that at the time) and then I had a partial response at the next 3 month scan. I’m hoping the pattern repeats itself this time.

      As I haven’t had any side effects as yet – its on with another 3 months of Nivo mono and see what happens in 6 months

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    • Replies
        • June 13, 2019 at 7:51 pm
        WithinMySkin
        Participant
          I know you were hoping for better news, Mark, but I think that ‘stable’ is great news! No side effects and stable is sometimes the best we can hope for. As the immunotherapy saying goes – “Be patient with the patient” and give that Nivo some time to start kicking in! Sending internet hugs (and a beer) your way!

          Lauren

            • June 15, 2019 at 12:15 am
            Mark_DC
            Participant
              Mark, i think its great that you are back on treatment, the side effects did not come back second time round, and that the treatment seems to be containing everything. and no spread. so while i wish for more this seems a good start and later can stay stable or get better. And amazed by all the other things you do too
              Best wishes Mark
            • June 15, 2019 at 4:20 am
            MarkR
            Participant
              Thanks both – calmed down a bit now and remembered that when I restarted treatment I would have given anything for stable so have got round to being thankful for what I do have. Hopefully it will just take a little longer and I can move to some reduction!!

              Taking some inspiration from GeoTony I’m just heading off to do an 80 mile cycling sportive to celebrate!!

                • June 15, 2019 at 10:26 pm
                lkb
                Participant
                  My recent scans yielded a report of stable and I went through a similar progression: Dang! Um. Hooray!
                  Wishing you a great cycle celebration!
                  Lisa
                  • June 16, 2019 at 6:38 am
                  MarkR
                  Participant
                    Love it!!
                    Decided that best thing is 3 months worry free til next scan!!
                  • June 19, 2019 at 1:39 am
                  jbronicki
                  Participant
                    Hi Mark,

                    I know you were hoping for a little more, but I’m just glad all is at least stable with bearable side effects. What is even more amazing is that you do stuff that “regular non-melanoma” peeps like me can’t even fathom doing like an 80-mile bike ride! Don’t forget how amazing you are even while battling the beast. I’m hoping for even more treatment effect in evidence at your next scans.

                    Best, Jackie

                    • June 25, 2019 at 7:36 pm
                    Dwarla
                    Participant
                      Some of my tumors have disappeared, some are stable and some new ones have shown up and grown. I longed for the time I would be NED! The ones that have grown are now gone or leaving and the rest are stable. I feel as good now about stable as NED. I have been very blessed with great results to treatments of Pembro, IPI, clinical trial of vaccine along with Tafinlar and Mekinist and now just Tafinlar and Mekinist. I had an allergy to Nivo. I pray that your tumors disappear!!! I pray that you do not get any side effects!!!! If you remain stable…..that’s great! My very best wishes to you!!
                        • June 26, 2019 at 9:10 pm
                        MarkR
                        Participant
                          Hi Dwarla
                          Thanks for your comments – has been feeling quite positive about things but had a seem appointment last week and booked in for 2 biopsies next week for suspicious marks on my skin. Hoping it’s not a recurrence but can’t help feeling things are going to change again!!
                          Best wishes to you and your fight
                          Mark
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