Stage IV – need advice
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Stage IV – need advice

› Forums › General Melanoma Community › Stage IV – need advice

  • Post
    • August 8, 2019 at 8:48 am
    askingforafriend
    Participant
    Recently diagnosed with aggressive stage IV. Spread to multiple organs, bones and spine.
    Please share any advice for treatment and supplements.
    Doctors have not yet given much hope or provided a treatment plan we are happy with. We want to fight this.
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  • Replies
      • August 8, 2019 at 10:53 am
      Bubbles
      Participant
      This primer I put together covers the current treatment options for Stage IV melanoma without resorting to trials = https://chaoticallypreciselifeloveandmelanoma.blogspot.com/2017/08/melanoma-intel-primer-for-current.html

      In short, the ipi/nivo combo has the best response rates going of the immunotherapies. We know that immunotherapy works best with the lowest tumor burden, so sometimes surgery to de-bulk tumors is helpful. If BRAF positive, targeted therapy with BRAF and MEK inhibitors can be a miracle drug for shrinking tumors though durability of that response is limited for many. Radiation combined with immunotherapy provides responses better than either treatment on its own. The primer explains all of this in greater detail. Make sure the patient is being seen by a melanoma specialist as these are treatment options that have become approved since 2011 and not all general oncologists have kept up.

      Hope this helps. celeste

      • August 8, 2019 at 1:54 pm
      Bubbles
      Participant
      One other suggestion, anon. Give yourself a name. It doesn’t have to be YOUR name….it can be XYZ! But if folks here can link a call sign to your story, you are likely to get more helpful answers upon asking additional questions. When folks are anon – we don’t know who we are answering as they tend to run together. Just a thought. Yours, celeste
        • August 8, 2019 at 1:57 pm
        askingforafriend
        Participant
        Thanks @bubbles for the help.
        My username is askingforafriend. Please tag me in anything you see 🙂
        This is a scary time for us but your help so far has been enormous.
        • August 9, 2019 at 3:54 am
        MelanomaMike
        Participant
        Awesome name! Glad you changed it, gets CONFUSING sometimes when ya dont know “which” Anonymous your reading post from or responding to! haha..but i digress….
        Im MelanomaMike nice to meet you! Your definetlly in the right place for good advice, news and Camaraderie! Even a place to rant if you need to! You should find solace that your NOT alone, alot of us here (like myself) are at a pretty dark spot being Stage 4, but alot of us our “stable” to at stage 4, read my bio if your able to find me, i know your new and youll learn how to maneuver around MRF in no time! Take care, youll learn of AWESOME new meds available! This may sound funny or dark, but, Today, 2019, is a great year to have Melanoma!! ….
        • October 7, 2019 at 4:53 pm
        MikeforMum
        Participant
        Hi Mike, I read your bio back in August and your story and message has been really inspirational to us! I’m the friend Askingforafriend was asking for – that sounds super confusing, and I’m also a Mike!

        And Bubbles, or C on your blog, your blog has been a gift! I’ve been trawling through it and learned so much that I couldn’t have done without it, so thank you for sharing!

        It’s been two months since we originally got the diagnosis (my mum is the patient) and it has been a rollercoaster journey ever since! Initially the scan showed cancer in my mum’s liver, stomach, spline and lungs, and they later found that it has spread to her bones in her spine, as well as spreading to her skull and brain. She underwent targeted radiotherapy for her back and brain for about 2 weeks, and as she was undergoing treatment she had a number of complications – risk of hypercalcemia because of the bone metastatis, lung infection and fluid in her lungs, low phosphate levels. She was very ill and we weren’t sure she would be able to leave hospital, but thankfully she started to make a recovery from the complications.

        It turned out she was BRAF positive and in mid august she started the BRAF and MEK inhibitor targeted treatments. She was discharged at the beginning of September and since then has been doing alot better, with her pain finally under control and able to walk again! She recently had a checkup and they think she’s responding well to the treatment, which is hopefully the awesome meds you talked about doing the work and we’re really hopeful ahead of her scan next month.

        I’ve found it hard to digest more information about Melanoma in the last few weeks after the frantic researching in the first few weeks, but I now feel ready again to talk more and get to know great people like you both with inspiring stories. We’re feeling extremely positive and grateful right now, and it means a lot that we have support and are not alone 🙂

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