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Be patient with the patient

Forums Cutaneous Melanoma Community Be patient with the patient

  • Post
    gopher38
    Participant
      So Bubbles frequently says this (be patient WTP) , quoting some melanoma big dog, when someone asks how long until immunotherapy starts working. I think the point being that it can start working quickly for some people, but sometimes takes much longer, so hang in there. I’ve got another data point to add.

      To recap previous episodes, I started opdivo in ~ Feb 2018 and went for a year on that. Aug 2019 (so about six months after ending opdivo and having been NED to that point), I had 8 new skin melanomas pop up all over the torso, from neck to butt. Started combo therapy in Oct going to roughly end of Dec 2019.

      Had a PET, CT scan in Jan (so just after stopping the combo), and they found multiple spots in the lungs. They also did a brain MRI and found one lesion in the brain. Just after that, I started getting severe pain and numbness in legs and feet, to the point where I couldn’t stand for more than short periods of time. Doctor thought that it might be spread to spinal cord or leptomeningeal fluid (apparently they had seen some suspicious – but not conclusive – things on the PET, and the spot on the brain was near the fluid). Things weren’t looking good at this point. We talked briefly about going to targeted therapy, but both him and I wanted to give the immunotherapy some extra time. Things have been looking up since then.

      First, I had the gamma knife for the brain lesion, which went well. Then, spinal tap came back (much to my surprise) negative for cancer. Full spine MRI came back negative also, and neuropathy – while still present – started lessening.

      March 2020 was the next CT, so about 3 months after ending combo therapy, and it started out like this:

      ** IMPRESSION: Interval resolution of nearly all pulmonary nodules, with one of the dominant left upper lobe previous nodules now is a small groundglass opacity. This likely indicates near complete resolution of this nodule. Close attention on follow-up again recommended to ensure stability/complete resolution. No obvious therapy-related toxicities. Etc. etc.

      My doctor admitted that he was very surprised. So somewhere between Jan (just after end of combo) and March (3 months after end of combo – 6 months after begin) I showed great improvement. In retrospect, I think the pain that I was experiencing at the end of Jan might have been the combo starting to kick in. Didn’t want to get too excited, because … I’m a pessimist, but I just had by last CT scan, which began:

      ** IMPRESSION: In this patient with a history of melanoma:
      1. No evidence of metastatic disease within the chest, abdomen, or pelvis. There is resolution of the previously described groundglass opacity within the left upper lobe. No new pulmonary nodules.
      2. Thickening within the distal esophagus, the differential includes immune mediated esophagitis vs. mass. If clinically indicated, consider upper endoscopy.
      3. Ectatic ascending aorta.

      I don’t know what 2 & 3 mean, but I think they’re not overly worrying. We’ll see where this goes, but I’m feeling much better about my prospects than at the beginning of the year. Last brain MRI came back with the same spot still present, but not growing, and nothing new. The doctor thinks that’s normal and positive. She said maybe it will absorb over time.

      I think the plan is to continue with opdivo for some time and keep the fingers crossed.

    Viewing 9 reply threads
    • Replies
        marta010
        Participant
          Wow – that is fantastic news. What a great turn around! So happy for you – keep the good news coming!

          Ann

          Christiane29
          Participant
            That’s unbelievable fantastic news. I just remembered your post from January which made me feel very very sad and you have no Idea how happy reading your post today made me. Sorry for the bad English. Just wanted to say that I am very happy for you. You rock
            Christiane29
            Participant
              That’s unbelievable fantastic news. I just remembered your post from January which made me feel very very sad and you have no Idea how happy reading your post today made me. Sorry for the bad English. Just wanted to say that I am very happy for you. You rock
              tedtell1
              Participant
                Wow, great news. Quite a turnaround. Hopes and prayers that this good news continues!
                Ted
                Bubbles
                Participant
                  Oh my goodness! You were making me nervous about the validity of my maxim there for a minute!!! You have been through one hell of a couple of years. So very hopeful that all the crazy is behind you and you feel better every single day!!!!!!!! Your story reminds me of the poor fellow who was with me in the first cohort of my nivolumab trial back in 2010. We had scans every three months and ANY “progression” meant we were out! In my group we were given Opdivo at 1mg/kg – a smaller dose than the roughly 3mg/kg dose that is basically used today. And sure enough, on his FIRST follow-up scan – after just 3 months of therapy – he showed progression. However, a bit later – as Dr. Weber cast about to find an effective treatment for him (remember – those were the days before any current targeted or immunotherapy other than IL-2 were FDA approved) additional exams showed shrinkage of his tumors!! Further scans showed the tumors continued to diminish and eventually resolve completely – with no further treatment!!!!

                  May your resolution continue!!! Thanks for sharing! Hugs – les

                  matthat
                  Participant
                    i came here looking to get off my opdivo. ive been on it 18 months, i did a yervoy-opdivo combo to get rid of brain tumor in dec 2018. mri showed it was gone early april 2019. ive been on opdivo since, have some acid reflux issues and right eye jacked up somewhat. reading your story i go back and forth how long i want to stay on opdivo no less than 1 yr no more than 2. is what ive heard. and if it reoccurs i guess i could go back on it. congrats on your good news.
                    casagrayson
                    Participant
                      Hey there! Great news on the scans! Mostly, though, I just wanted to say I *love* your dog. I am a Cavalier King Charles Spaniel’s servant, as well. Whiskey (aka Lovejoy Whiskey River) runs this establishment, but he is a complete love bug. I know your Cavalier is a great therapist through all this!
                      MelMel
                      Participant
                        Terrific news! They say good things come to those who wait and apparently so! I am so extremely glad you have reached this much awaited state. Now, you can definitely have a sigh of relief.
                        Best wishes and hope you enjoy your summer even with the craziness around us.
                        Melanie
                        TimCT
                        Participant
                          That’s great news! Gives hope to people like me who had an initial response to the combo, but have since progressed and are hoping against hope that another response might yet come our way!
                          ThinkingPositive
                          Participant
                            Cutaneous
                            Thank you for your post, as it sounds very encouraging to people like me who may get impatient .
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