Stage 4 treatment questions/seeking input
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Stage 4 treatment questions/seeking input

› Forums › General Melanoma Community › Stage 4 treatment questions/seeking input

  • Post
    • October 23, 2018 at 1:37 pm
    JAE
    Participant

    Hi All — Quick background: my 40 yr old husband was diagnosed with Stage 4 Melanoma shortly after undergoing emergency surgery to remove a large brain tumor followed by an intestinal resection a year and a half ago. He does posess the Wild type, genetic mutation that allows for BRAF. Subsequent brain and spinal radiation, IPI/NIVO immunotherapy followed by Nivo only, some Taf/Mek has helped to end tumor growth and eradicate many tumors. currently Mektovi/Braftovi with aim to add Nivo . Overall response positive except for lung and liver tumors that later appeared to grow. Biopsies of these weren't too helpful, showing a mix of necrotic, active and inflammed tissue. Doc's also weren't sure if there was some cellular mutation occurring.  Primary treatment has been by Northshore Kellogg with heavy consults and visits with UofChicago and MD Anderson.

    Of current concern are the growing lung tumor and liver tumor that show same to higher "darkness" in scans while on the braftovi and mektovi. Docs are going to do a PET earlier than planned due to these CT results, and consult. We of course want the least invasive yet highly effective option, which is why I write today. I'm interested to know of others who may have been at a similar point willing to share, or provide any input. Clinical Trials? Radiation? Another biopsy? Surgical removal? return to ipi/nivo? return to Taf/Mek?

    Many thanks in advance,

    Jennifer

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      • October 27, 2018 at 5:20 pm
      MelanomaMike
      Participant
      Hi Jennifer, im Mike, nice to meet you under our shared situation! Best & hopeful wishes & vibes to your husband! He sounds “stable” in your 2 post’s about him, and hes VERY much in the Fight! (As we all are!)
      Im not seeing many answer your recent post, im wondering if its because of MRF (this website you & i are chatting on) the site is having some issues on Posting, Entering this site “reCAPTCHA” problems, iv noticed in the past month less traffic from our lovely family here & its sad..I cant really offer you up an opinion of what yer husband should or could do but, whatever does occure im wishing him & you the VERY BEST & speedy recovery…maybe consider Face Book, theres a cool club (like this one) called MelaHomies United & another called “Stage 4” something or other, cant remember its full name but youde Find it.. Take care..
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