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Many symptomatic brain mets – need hope

Forums Cutaneous Melanoma Community Many symptomatic brain mets – need hope

  • Post
    Jenny
    Participant
    Hi!

    I have been lurking this forum for months now, and feel that i need to post and ask for advice.

    My husbond is stage 4. We just learned that he has many brain mets (don’t now exact number). He is symptomatic, with blurred vision on one eye and has difficuly moving his  legs and walking. I don’t now what his next treatment will be, but I am worried. His onc is not avalible for dicussions until next week. His nurse mentioned something about chemo.

    His initial diagnosis was in 2016, mole on his leg was removed and positive sentinel node.
    It looked like all would be fine, but then last May (2020) he noticed a bump in his groin. It turned out to be melanoma and all lymph nodes in his groin and lower belly was removed. Two of them had melanoma in them, but there was no other spread at that time.

    They started him on adjuvant pembro, but after only two doses, they could se from bloodwork that there was some spread. Pet scan showed spread to lymphnodes and several bones. They started him on ipi nivo combo, but after only 2 rounds, he had grade 4 liver toxicity and had to stop treatment to go on high dose cortisoids.

    However, he seemed to respond greatly to the combo and everything in his body had shrunk (or disapered, not sure exactly). He did have some neurological issues with numbness in one foot, but his onc told us that it was neropathy side effects from the combo. My husbond was scheduled to resume on opdivo alone this week.

    But then last sunday, he had blurried vision on one eye. I took him to the emergency hospital, and they did a headscan and found many mets in his brain. They put him on cotrisoid to reduce the swelling and the edema. So far, it has not gotten any better, but at least not worse.

    He is back home now, and we are waiting to hear what options for treatment there is. I spoke to his nurse, and asked about radiation, but she said they don’t do that when there are several brain mets. I think that sounds odd, considering what I have been reading on this forum.

    I feel so scared now, and I just wonder if any of you have delt with symptomatic brain mets, and if you have any ideas about possible treatmets. He is braf wild typ.

    We are in Sweden, so not sure about what posibilities we have, but if needed, I will look for treatment internationally.

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  • Replies
      tedtell1
      Participant
      Hi Jenny;

      There are much more knowledgeable people than I on this forum but I can remark on a few things. First, make sure your hubby is seeing or at least consulting with a melanoma specialist. Also, find our if your husband has the braf mutation or not. That is important for treatment considerations. I may be wrong but I believe others have said that here in the U.S., they can still do radiation with multiple tumors in the brain. Please realize that there is hope though, and a lot of people here have a lot of knowledge. Blessings to you and your husband in this difficult journey and I will stand back and hope Ed and Celeste post on this subject soon.

       

      Ted

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      Beth
      Participant
      Hi Jenny

      I am not an expert on the various treatment options but I can share my experience with brain mets.  I was originally diagnosed in 2017 with a mole in my right thigh which was removed and everything was clear.  In January of 2020 we discovered the melanoma had returned and spread to my brain, lung and abdomen with multiple brain mets (7 I think).  I was starting to show mild symptoms when we found that the melanoma had returned; dizziness, nausea and one instance of almost passing out from the swelling around my brain. I had a craniotomy to remove the most threatening of the lesions.  After the surgery I had 3 rounds of combo ipi/nivo which I responded well to but like your husband I had to stop due to toxicity.  I had 2 rounds of nivo but stopped that due to pancreatic inflammation.  We decided to hold off on further immunotherapy last spring because everything had stabilized.  I am currently on targeted therapy (BRAF+) which I started in November due to enlarged lymph nodes in my chest which showed melanoma when biopsied.

      I second Ted’s recommendation to find a melanoma specialist who is familiar with all the various treatment options.  I would also suggest getting a second opinion to make sure you are comfortable with what your team is recommending.  I spoke to two different teams (including neurosurgeons) that specialize in melanoma and treatment of brain mets before deciding on a course of treatment.

      Sending best wishes to you and your husband as you navigate this.

      Beth

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      Jenny
      Participant
      Hi Ted and Beth!

      Thank you for your kind words!
      I think that my husband doesn’t have the BRAF mutation, but we will ask about it when we meet his oncologist next week.

      His oncologist is a melanoma specialist, so I feel that we can trust him. We might get a second opinion though, if we are the least uncertain about the sugested treatment.

       

      Jenny

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      Juan Arias
      Participant
      This reply has been marked as private.
      Jenny
      Participant
      Hi Juan,

      He only had one brain scan before, six monts ago. That one was clear. I beat myself up about not asking for a new brain scan earlier, but I thougt i could trust his onc.

      It is good to hear that you had success with treating that many brain mets with srs. I hope that my husband will get srs too, and that he will be able to go back to the nivo treatment he was scheduled for.

      Jenny

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      Juan Arias
      Participant
      Jenny, SRS is only available for tumors greater than 2mm (maybe less depending on machine). Radiologist is the indicated to evaluate the procedure, they will have the last word. Keep strong and with faith.

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