Brain mets found after being declared NED 3 months ago
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Brain mets found after being declared NED 3 months ago

› Forums › General Melanoma Community › Brain mets found after being declared NED 3 months ago

  • Post
    • September 27, 2021 at 4:36 pm
    soonerjenn14
    Participant
    Hi all,

    I had my first set of follow-up scans last Friday. I had been having headaches for a few weeks but thinking everything Melanoma-wise was gone I assumed it was allergy/sinus stuff. I finally went to the doctor and got some antibiotics for what I thought was a sinus infection but they didn’t help at all. I had already alerted my oncology team and they said that was a good idea and we would discuss on Friday. I had my CT scans and then my appointment after and we were already discussing scheduling a brain MRI when the person reading my scans called and said the neck scan caught some masses on my brain. So, off I went to ER to get a brain MRI done right away. They found 8 masses total and kept me in the hospital all weekend. I am on steroids now for the brain swelling which was causing the headaches. I met with a neurosurgeon who said he did not see any need for immediate surgery, and then a radiology oncologist to discuss radiation. We are moving forward with gamma knife radiation and see how it goes. Looking for any advice or experiences anyone can share about this? It’s quite a shock and a blow after thinking I was good, but I know this is how Melanoma plays…dirty and sneaky. But I am a fighter and certainly not going to let it win!!

    Thanks in advance!

    Jenn

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  • Replies
      • September 28, 2021 at 9:25 pm
      gopher38
      Participant
      Hello Jenn,

      I had gamma knife for one met. It was less traumatic than I expected.  Worst thing was having the “halo” put on, but they gave me pain killer injections in the four attachment points, so it didn’t really hurt much.  Still a bit disturbing. The procedure was nothing.  I didn’t have any after-effects, but I know others have.  Just try to stay calm and all will be well.  Cheers.

      Warren

      • September 29, 2021 at 9:58 am
      Bubbles
      Participant
      So sorry, Jenn!!!  Melanoma sucks great big hairy green stinky balls!!!  Still, like Warren, I had SRS to a brain met and the worst thing about it was the halo application and removal!  But, all in all – very doable.  And…I’m still here!  11 years later.  Still NED for melanoma.  Plus, a lot of places use a mask rather than the halo these days.  Hope you have the easiest time possible dealing with this mess.  Hang tough!  Wishing you my best!  Celeste
      • September 29, 2021 at 1:05 pm
      soonerjenn14
      Participant
      Thank you, Warren and Celeste! They did fit me for a mask yesterday, so no halo. I’m ready to fight again, but sure was not expecting this.

      Appreciate you sharing your experiences!

      Jenn

      • October 1, 2021 at 11:37 pm
      Christinad
      Participant
      Hi Jenn, sorry you’ve encountered this bump in the road. Sending good vibes your way. I hope all goes well with the radiation and you are NED once again. Hang in there! ((Hugs))
      • October 2, 2021 at 10:33 am
      soonerjenn14
      Participant
      Thank you, Christinad! I appreciate the thoughts. Hope you are doing better!

      Take care,

      Jenn

      • October 3, 2021 at 1:07 pm
      sing123
      Participant
      Jenn, I had 3 brain mets (also a shock after NED) and the radiation was not as bad as I would’ve thought. I don’t even recall being very tired afterwards. I do recommend that you consider talking to oncologist about immuno after. This is based on advice from Dr. Jeffrey Weber.  I decided to go with combo and was only able to tolerate one of the four ipi/nivo. I had previously been on just Opdivo. I have been again NED going on 17 mos!!!
      • October 3, 2021 at 1:51 pm
      soonerjenn14
      Participant
      Hi sing123,

      Thank you for sharing! I already have an appointment with my oncologist this week to discuss meds following the radiation. Glad to hear you are NED again! I have 8 mets right now…hoping for no more!

      Take care!

      Jenn

      • October 4, 2021 at 11:50 am
      JudiAU
      Participant
      I had brain radiation twice after resections, to fry any remaining bits of tumor (not melanoma) and melanoma met. I was terrified honestly but really it was not that bad. I was mostly tired. Both times my husband took the kids out of town and another family member drove me. I needed that peace and I was quite tired.

      I do have more grey hair that appeared immediately after radiation. My hair was really short and it was obvious. I even had some hair that was brown and then abruptly  white.

      After brain surgery 3x and radiation 2x I do personally feel like I have some loss of cognition. I am slower than I was and my math is significantly worse.

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