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Surgery to remove brain mets
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Surgery to remove brain mets

› Forums › General Melanoma Community › Surgery to remove brain mets

  • Post
    • May 23, 2017 at 4:57 pm
    Ridingaroundwith27Jennifers
    Participant

      Hi Everyone.

      Has anyone had surgery to remove brain mets?  What was your experience like?  I had a fast growing met removed on March 24th which left me with loss of feeling in my right leg and foot.  The MRI at ten days post surgery showed regrowth.Since then I've started back on Nivolumab coupled with radiation.  At my follow up the brain surgeon mentioned that he feels if he hadn't removed the met I would have lost the use of my right leg and foot.  

      I'm waiting for my next MRI to see if the radiation/nivo combo are working on the regrowth and if there are any new mets.  This met popped up while I was taking a break from the Ipi/Nivo combo treatment due to hepatitis.  Aside from the hepatitis the treatment had been working well and many tumors had shrunk.  I just had my 4th Nivo only infusion yesterday and aside from high TSH it looks like I'm tolerating the treatment well.  Abdominal tumors are getting smaller or not getting bigger but progress has slowed way down.  

      My 5 year old has started asking me why I have a big bald spot and why I'm still sick.  She thinks I should be better already (it's been 7 months).  I told her the medicine made my hair fall out but she doesn't understand how that is possible.  

      Thanks,

      Jennifer

       

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    • Replies
        • May 23, 2017 at 5:33 pm
        UBContributor
        Participant

          Oh dear, so sorry for what you are experiencing and scaring to read too.  I hope those who had brain radiation will share their stories here. Good luck! Keep us updated!  

          • May 23, 2017 at 6:12 pm
          marta010
          Participant

            Hi Jennifer – since first diagnosed in 2012, my husband, Larry, had had two craniotomies and 4 gamma knife procedures for brain mets.  In addition, he's had multiple additional treatments (Zelboraf, Ipi, Dabrafenib, Radiation, Keytruda). His brain (and body) is currently stable.  He had no issues following any of the gamma knife treatments or after the first craniotomy.  Second craniotomy left him with some vision loss due to the pressure from the brain met which seemed to come out of nowhere and was quite large when he had surgery to remove. Since it's been more than a year since the last craniotomy, we don't think his vision will come back – too much damage from the tumor. Are you BRAF positive?  Have you tried dabrafenib/MEK?  Hang in there.

            Ann

              • May 24, 2017 at 12:58 am
              Ridingaroundwith27Jennifers
              Participant

                Thanks for sharing Larry's story with me.  I'm waiting to find out if I'm BRAF positive.  They did the test back in September but I didn't pay much attention to it then so I'm waiting for them to pull the results out of the file for me.  I haven't tried dabrafenib/MEK yet.  I'm starting to think about asking the DR when we need to look at additional treatments.  The nivo seems to be working but I don't know how long it will continue to work.

                I hope Larry continues to do well.

                Thank you,

                Jennifer

                • May 24, 2017 at 3:41 pm
                zfishberg
                Participant

                  My husband had a craniotomy in October of last year to remove one large lesion- about 3 cm. From the left parietal lobe.

                  the surgery went very well and he did not have any complications. He recovered very quickly.

                  He had 2 Gamma Knife procedure after that. He did experience swelling and pain after both of them and his speech  and balance were affected as well. After taking steroids all these complications went away.

                  He was on Taff/Mek and then on Keytruda, but the decease progressed in the brain.

                  Now he is on ipi/nivo – tomorrow is the second infusion.

                  This is our last hope to control the beast.

                  • May 24, 2017 at 4:31 pm
                  Ridingaroundwith27Jennifers
                  Participant

                    I hope the ipi/nivo treatment is the answer for your husband.  I initially had two brain mets that disappeared while I was on the ipi/nivo treatment.  The met I had removed popped up when I was off treatment due to hepatitis.  I know many patients get through the course with minimal side effects.  Hopefully your husband is in this category.  Thinking good thoughts for you both.

                    Thanks,

                    Jennifer

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