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Recurrence – skull met – after 2 years NED – **help, please**
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Recurrence – skull met – after 2 years NED – **help, please**

› Forums › General Melanoma Community › Recurrence – skull met – after 2 years NED – **help, please**

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    • October 23, 2019 at 4:25 pm
    sister of patient
    Participant
      Hi all – I’m having a hard time sitting and waiting for answers so decided to post, even though I don’t feel I have enough info yet to properly describe this. My sister, Leisa, has a new met – it’s in the right frontal lobe and is already measuring 6x4x4. Her brain is clear, thank goodness!! and that’s all we really know so far, other than her brain radio-oncologist has already said it’s nothing that she would radiate. A bone scan is being scheduled and her regular CT scan was just completed two days ago, with regularly scheduled onc appointment on for the 29th. So, we won’t know the extent of any other spread until all scan results are in. She’s asymptomatic so far, in regards to this skull met but she does have new excruciating pain in her spine again so if the bone scan shows spread there we won’t be surprised.

      I am wondering though how they treat skull mets if they’re not radiated. Treating mel onc has verbally said (on the phone) that they might have to biopsy, so I’m wondering how that is actually done >> will they just drill through the skull and remove a chunk for biopsy? Do they ever just remove a flap of the skull, take the tumour off completely … similar to a craniotomy? (That would be my choice but this is not happening to me – my sister is terrified of that thought).

      Onc has already stated that all treatments are back on the table in the event of recurrence … so now were there. Again, it’s too new to even have a plan yet – that’ll be next week but I’m going crazy here wondering about this skull met. I have searched on here but not finding many “clear’ answers and it seems, in most cases, radiation was done.

      Has anyone had this type of recurrence? If so, how was it treated? And, what is the danger to the brain as this thing grows – other than spread, i.e., displacement, seizures, impaired vision, etc. >> can it “break through” the brain barrier just by virtue of being there (I mean other than systemically)?

      Any info from our resident experts (Celeste, Ed) would be greatly appreciated!!!

      Thanks.

      Barb

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    • Replies
        • October 24, 2019 at 1:07 pm
        Bubbles
        Participant
          Hey Barb!

          So very sorry for ANOTHER thing!!!! Dang! If I’m understanding correctly, this lesion is in the bone of the skull only? I’m going to have to do some thinking and some research. I know folks with bone mets who have responded well to the combo of immunotherapy and radiation. Depth of beam in radiation is hard to manage sometimes….and given the radiation your sister has already had to her brain may be what made them have their quick “no radiation” answer. I know in my care of patients with issues other than melanoma, removal of a bit of skull (no matter how horrible that sounds) is a fairly common procedure, replacing it with a graft or plate. And yes, sampling for biopsy is a bit as you described. But, clearly there is much for your sister to decide and both of you to learn about her status. As far as impact on her physical status…..it depends. If it is “only” a bone met and grows outward….then pressure on the brain and related problems like seizures would be less likely. The frontal lobe of our brain has functions more related to thought, emotion and inhibition….rather than life functions or (for the most part) vision.

          I am so sorry you both have to deal with all that. I will be thinking about you both emotionally and treatment wise. You are tied for best sister in the world with my dear Ruthie. Without her, I know my chances of still being here are very slim!!! Much love and big hugs. Keep us posted with what you learn. I’ll try to rouse the Edster and let you know of any ideas I come up with! les

            • October 24, 2019 at 2:47 pm
            sister of patient
            Participant
              Oh Celeste – thank you, thank you, thank you for answering this!!! I was soooo hoping you’d see it!!!

              Yes, the met is in osseous tissue only, on the inside as far as we know – nothing can be seen externally – and she has no visible in-transits that she can find or feel anywhere. The pain in her spine though is starting to radiate to her ribs, just like before, so if anything pops out on a rib, we’ll know what it is right away.

              I am stumped by the “no radiation” declaration and don’t know if it’s due to the previous WBR or the location but I am all for getting the thing out of there if surgery is possible. We know she’s an excellent responder to treatment so that would be my vote – get it out and start back on immuno right away – or a short course of taf/mek even after removing it and then onto immuno. I have confidence that immuno alone could do this but it’s the time factor that worries me – how long can this thing grow and not cause damage or symptoms and, like it did to her back, can it actually fracture the bone it’s growing from and cause a skull fracture . And, as I mentioned above – the brain shield – I am terrified this thing could cause a pathway to becoming leptomeningeal … I guess that’s my biggest worry.

              I wish I had more info!! But I thank you again for answering and will watch for any more “light” you can shed – I at least feel like someone is psychically “holding my hand” through this … and if Ed has any of his great videos that address this, I’d be up for viewing those too!!! I’ll definitely post more information as it becomes available!!

              Take care!!!

              Barb

              • October 24, 2019 at 5:29 pm
              Suzi
              Participant
                Why can’t the do surgery? I just had 2 tumors removed from my brain
                • October 25, 2019 at 12:14 am
                sister of patient
                Participant
                  That’s definitely what I’m hoping to hear – that they can!! I’m so sorry you’re having to deal with brain mets and wish you the best possible outcome and healing!!!!!
                  • October 25, 2019 at 5:59 pm
                  Suzi
                  Participant
                    I had Dr. Komotar at university of Miami, best neurosurgeon in the world
                  • October 29, 2019 at 7:05 am
                  DZnDef
                  Participant
                    Hi Barb! Great to see you’re still posting about Leisal. Sorry you guys are going through a rough time right now. I’d just like to mention that I’ve had two craniotomies and they have been the easiest surgeries to recover from. Almost no pain post-op. It’s usually the skin and muscles that hurt the most after surgery, but we don’t move our scalps much so the pain is pretty much non-existant. In my case, they were digging in to my brain both times so it might be a bit different. They cut out a section of my skull but put it back with some bolts and sewed my scalp back together.. Is hair loss a concern for her? While that might seem minor, it can be a struggle to maintain a sense of normalcy while going through all this. That’s one reason I take long breaks from the board. I like to pretend I’m fine. Another reason I stay off is that I want to give people hope and my situation continues to evolve. No NED for me for a while now.. on the plus side, I am still around three years after brain mets so that’s cool. Best of luck to you and Leisel (sp?).
                    Cheers!
                    Maggie
                      • October 29, 2019 at 7:10 am
                      DZnDef
                      Participant
                        Darn, I just saw I got your sister’s name wrong. I can blame brain mets or brain fart. I’m going with brain fart this time.
                        Cheers!
                        Maggie
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