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    seireland0611
    Participant

      I guess my mom is an odd case since she has ONLY brain mets with an apparently invisible primary. 

      The chief neurosurgeon at our top hospital did her craniotomy and got the biggest of the buggers.

      So now we've got a 1.8 cm at the front of left parietal lobe, 8 cm one in the left posterior putamen, and 3-4 ish mm one in the left frontal lobe right next to where the biggun (2.8 cm) was removed. 

      Our radiation oncologist is also the chief of that department, and she said she thinks we will only need to do one gamma knife treatment, then scans every 2-3 months and more gamma knife if we have any recurrences (and probably will, that seems to be how it goes). 

      She said that she looks at this more as "being able to manage something more akin to a chronic disease" than a doom and gloom death sentence.

      This was the best news we could've hoped for, and we've even yet to meet with the melanoma specialist next week. 

      If anyone as any input or comments, I welcome any and all 🙂

      As a side note, my mom has been taking CBD/THC oil throughout this whole process. I know it's unlikely to have any curative properties on it's own and is mostly useful for symptom reduction (appetite, insomnia, pain, etc) but I'm also kind of wondering if perhaps it has contributed with the remarkably minimal edema she's had surrounding any of these tumors. Just something I'm curious about, because I feel like the lack of edema gives her a bit of wiggle room for treatments that might cause some.

      Anyway, I'm super happy and just wanted to share with you all!!

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        Bubbles
        Participant

          Immunotherapy would still be something to push for!!!  It works best when the disease burden is low…even when NED!!!!!  Which hopefully your mom will be after having had a craniotomy and SRS.  Stage IV melanoma is not something to "watch and wait" on.  I am saying this from the perspective of a Stage IV melanoma patient…upper lobe of lung removed to rid myself of a met, brain zapped for a met, and then tonsil removed due to melanoma…all in rapid succession.  BUT…with 2 1/2 years of Nivo/Opdivo…..an existing brain met disappeared and no more mets have developed….even with my last dose given in June in 2013.  Wishing you both well.  c

          cancersnewnormal
          Participant

            Totally agree with what Celeste said….. discuss immunotherapy with mom's medical specialist. If she responds well to the immunotherapy, she may be able to avoid gamma in the future! Immunotherapy treatments do have some potential side effects, but with metastasis to the brain, I can't imagine her melanoma specialist wouldn't recommend a systemic med… even though the surgery and gamma have taken care of the currently visible tumors. It only takes one wee little mutant cell to proliferate into a new hunk of mela-meat. If you and your mom haven't already read up on Yervoy, Keytruda, Nivo, or Opdivo, that would be a good first step to prep for her visit with the specialist. 

            As for the THC oil, I can't confirm nor deny its potential efficacy, but as someone who has undergone 2 craniotomies and 10 rounds of gamma… I can say that some of us just aren't "swellers". The only times I was ever put on steroids, was after seizures… which lead to both of the crani's. :-p  The other 37 little brain lesions that cropped up over 2 years, were all pretty well behaved post gamma. It is great that she has had minimal edema! It sure makes "bouncing back" a smoother road. : )

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