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4th Petscan and 2nd Brain MRI
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4th Petscan and 2nd Brain MRI

› Forums › General Melanoma Community › 4th Petscan and 2nd Brain MRI

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    • February 27, 2018 at 8:07 pm
    Sharon93065
    Participant

      Hi, after my 3rd Petscan two new nodes glowed in my 'gut.' That was Dec 6th. This new Petscan showed one is gone and the other reduced. 1st of January I was put on every other week treatments of 1mg Opdivo. It is working and Dr will keep me on it.  Blood panel is good.  Liver behaving itself.

      The not so good news, i had a brain mri June '17 it was clear. My new mri done last week shows two very small spots, as Dr said, quote " I won't sugar coat it,"  so new mri ordered in 3 more weeks to compare it with.  So I lost sleep last  night.  I have read that many of you have had the cancer spread to the brain and are doing ok.  Your postings give me hope. 

      A little history, onlty was able to have 3 of the Opdivo/Yervoy combos.  Ending Aug '17. Prednisone until Dec'17.  New treatments Jan '18.  

      Also the Petscan showed all the original 6 tumors still gone, and the ground glass in the lung that used to be a mass can  no longer be seen.  Thank you Lord!!

      Now worried about the brain.  

      Thank you all Bubbles, Jennifer, Ed and others that reply and help me feel like part of your community. We will fight this Beast!!

      Sharon from Simi Valley, Ca 

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    • Replies
        • February 27, 2018 at 9:13 pm
        cancersnewnormal
        Participant

          Sharon… sorry to hear of the brain metastasis. It is indeed good news that the rest of your body is doing well with the Opdivo though! So just to be sure I'm perfectly clear, you were put on combo in June 2017 and at that time had a clear brain…. 3 infustions deep, then not on active infusion treatments from August 2017 until January 2018. The good news is that your body is responding with an effective attack from the infusions you did receive. The brain is a little more particular region, as our immune response is lowered there for our "self protection" mode. It's possible something slipped past the goalie during your down time, but it's also possible that you may need a little something extra to help out in the brain. Could also be that the two very small spots were "just noticed" this time around, by a more diligent radiologist, but were previously there lurking. All of that said… IF these are indeed new brain lesions, attack swiftly while they're small. Radiation combined with the immunotherapy can have an extra hard punch. I don't know who your doc is down in the Simi area, but I live on the central coast and drive to USC for treatment. Dr. Eric Chang is head of Radiation Oncology there, as well as being co-director of their gamma unit. He's excellent. Really really really excellent. Before Keytruda kicked into full gear on me, I had a LOT of gamma, and was cropping up a LOT of brain tumors. The team there is very experienced. If it turns out that those two little blips on the MRI are indeed "something of concern", you're in very close range to one of the best in the nation for treating them. Zap those little buggers and let the Opdivo continue to do it's thing. No need to hit any panic alarms and lose sleep just yet. : )  

            • February 28, 2018 at 3:20 pm
            Sharon93065
            Participant

              Thank you Niki for your reply.  I just read  your history, you have really been thru it.  You were cropping upa lot of tumors, 10 gamma radiation treatments.  How often do you get a mri to check on  your brain?  This forum helps me to not be so discouraged.  Thank you and continue your fight!  Sharon

              • February 28, 2018 at 6:54 pm
              cancersnewnormal
              Participant

                When those brain lesions were popping up in multiples each month, I was getting very regular brain MRI's at 3-4 week intervals. The smaller they are, the more easily zapped! Thankfully, Keytruda became FDA approved, and really seriously put the brakes on the lesion making machine in my head. I was getting MRI's every 2 months until we were a year beyond that finally little bugger that we bug zapped in Feb 2016. This past year, Dr Chang felt comfortable enough to move me to 12 week intervals between checks. It took a few years to get here… but from every 3 weeks to every 3 months has been a really nice change of pace! I'm probably not too far off of being able to slip another couple of weeks to a month in between… buuuuuut… I'm pretty sure my doc's are going to miss me too much when check ups slim down to only a few each year. HA HA HA! 😉  You know when you become personal friends with your gamma nurse, you've probably been in the unit a few too many times. LOL!  Serioulsy though… if you look into a second opinion for your brain MRI… check out Dr Chang. His dad was also a radiation oncologist. He was born to do this. Undergrad degree from MIT, and graduated Harvard Medical with honors… he's also currently the co-leader for the American Society of Radiation Oncology (ASTRO) brain metastasis guidelines development task force. He's seriously top notch in the business. https://keck.usc.edu/faculty/eric-lin-chang/  ….. aaaaand his bedside manner is above and beyond. My insurance company wanted me to have brain MRI's done here locally. I tried that… then I called them and fought to have them done via Dr Chang at USC. He and his team are so much more diligent and experienced. I know, I sound like I'm his PR person… LOL… but when it comes to your brain… you want to be sure you've got the best set of skills you can rummage up! Your brain can do the most damage in the shortest amount of time. Keep punching that melanoma in the face!

              • March 4, 2018 at 2:24 am
              Ridingaroundwith27Jennifers
              Participant

                Glad to hear your liver is behaving iself.  Yervoy/Opdivo knocked out my first two brain mets.  The third popped up when I was off treatment due to liver issues.  Surgery, radiation and opdivo have gotten rid of that one and it's recurrence and have kept my brain clear for almost a year.  I have brain MRIs about every two months.  Try not to worry too much.  If these are small and you don't have any side effects then hopefully the treatment can get rid of them before they cause any issues.

                Good wishes to you.

                Jennifer

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