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Anyone have large tumor burden that is now NED

Forums General Melanoma Community Anyone have large tumor burden that is now NED

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    Christinad
    Participant
      My Oncologist said I’m responding well to immunotherapy but I look at my PET scan result and get discouraged because I have so many areas of tumor burden. I’m thankful the PET scan showed all areas are shrinking but wonder how realistic is that the immunotherapy will get rid of all of it. My Oncologist said he’s seen worse so I’m trying to stay optimistic. Hearing from someone else who had a similar situation who is NED even if it’s only one would be helpful.
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    • Replies
        Johnjk04
        Participant
          Christinad, I know that you’re going through a tough time now. It will get better.

          Jan. 2012, I had melanoma in the brain, both lungs, liver, kidney, gall bladder, left adrenal gland and spinal cord.

          Two craniotomy, three Gamma Knife (brain) and the first clinical trial of ipilimumab and nivolumab did me well.

          I have been NED a for nine years now.

          Be patient, the immunotherapy takes it’s sweet time. Wishing you the absolute best.

          Christinad
          Participant
            Thank you for sharing! Reading your response has me in tears and has given me hope! Congratulations on 9 years NED.
              Christinad
              Participant
                <p style=”text-align: left;”>John, Can I ask how long it took before you became NED?  Since you were on the clinical trial quite some time ago I’m assuming your infusion schedule and dosing was different than mine. How long were you on the ipi/nivo? Did you start with the combo and finish with nivo for the rest of your treatment?</p>
              Johnjk04
              Participant
                Christinad, I became NED, seven months into the trial.

                I received sixteen treatments of Ipi / Nivo over the course of two years.

                According to the trial’s protocol, I am not a full nor even partial responder. I had two brain tumors, six months into the trial.

                So keep your faith and hope. This immunotherapy is one helluva treatment.

                My trial was at Yale – New Haven (excellent, superb). I’ve moved to northern Arizona and the cancer care here is straight up lousy.

                Just glad that it’s my last set of scans and also last oncology visit.

                  Christinad
                  Participant
                    What a great feeling it must be to have your last oncology visit and scans. Way to fight the fight! I’m very happy for you! Enjoy your success!
                  Johnjk04
                  Participant
                    Christinad, yes it does feel nice. Had my brain MRI and CT scan last week. My oncologist is on a two month vacation (isn’t that crazy?). The office asked if I’d like to see a different oncologist, I told them I’d wait for two months (isn’t that crazy?).

                    Christinad, your last scan day and oncologist visit will come as well. Just carry faith, hope and patience along with your journey.  Dr. Allison and Dr. Honjo, both made brilliant discoveries in immunotherapy. Their are plenty of scientists working now to make even more advanced revelations.

                    May the peace of our Lord, Jesus Christ, keep you company. Christinad, you’ll be in my prayers !!

                      Beany
                      Participant
                        Wow johnjk04, that is a wonderful outcome. Very happy for you. It  is inspiration for everyone.

                        Christinad、I had 13 tumors in mg liver, three in my lungs and one in my brain. Last two scans shows only a scar (most likely) in my brain. I think that is what Ed described as NEAD. Lung tumors shrunk quickly–about .195 mm per day but the brain tumor was slow.

                        Regards and best wishes,

                        Adam

                      Johnjk04
                      Participant
                        Way to go Adam !!!
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