Stage 4 spreading fast
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Stage 4 spreading fast

› Forums › General Melanoma Community › Stage 4 spreading fast

  • Post
    • February 1, 2019 at 2:50 pm
    Conor2710
    Participant
    Hi I’m new here and my name is Conor, I’m a 26 year old male. I was diagnosed in November after almost dying from a brain tumor that had metastasized which they had speculated had traveled from my axillary lymph nodes on my left, all of which seemed to be cancerous and were removed on Dec 5th. After scans in November and brain radiation, I finally got on an Optivo treatment started yesterday. I also got scan results yesterday which show I have a 3.3 cm met in my liver, and a couple of smaller ones in my lungs as well as 3-4 on my upper left side. I fear I may also be developing another brain tumor based on the symptoms I’ve been showing. I just want some advice or something from a veteran of this disease. I’m so tired of listening to others and what they think is right, this is basically my last straw. I honestly don’t think I have much longer
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      • February 1, 2019 at 3:33 pm
      RichInLife2
      Participant

      Hi Conor and welcome to the forum. I'm sorry for the reason you have to be here, but I'm glad you found us. I have a few questions. Where are you being treated? How was your original brain tumor treated? Was it surgery or radiation? Did you also have recent scans of your brain and what did they show? What are your symptoms that make you suspect another brain tumor? Have you discussed this with your doctor? Finally, were you offered the combo treatment? Is there any reason it wasn't offered to your or you chose not to do it? Usually that is considered standard of care for stage IV.

      A lot of questions, I know, but it will help people give you better advice. My first advice would be to not catastrophize until you have more information. There are many people on this forum who were in really rough shape who are currenly either recovering or showing no evidence of disease. And there are a lot of people who can give you better advice than I can. And just remember, your diagnosis is not your prognosis.

      Welcome!

        • February 1, 2019 at 3:40 pm
        RichInLife2
        Participant

        And this is RichInLife2. Don't know why it showed as anonymous. Anyway, check my profile. My original tumor load was very similar to yours. After six Opdivo treatments and SRS to the brain, my tumors have shrunk or holding steady. 

        • February 3, 2019 at 4:11 pm
        Conor2710
        Participant
        Hi! My original brain met was surgically removed followed by three doses of radiation to the spot, I’m supposed to go back on the 6th for a checkup and will probably be scanned. I went to the hospital a couple of days ago because I couldn’t for the life of me stop vomiting and got a CT scan to look for a brain growth which didn’t appear. So I assume its the met in my liver acting up but it makes me constantly nauseous and to make it worse I was prescribed pain pills that as are 5/325 and I know that much acetaminophen is not good for my already crap liver. And as for a combo of treatments Idk that’s what they told me to do was the opdivo bi-weekly.
      • February 1, 2019 at 3:48 pm
      ed williams
      Participant

      Hi Conor, anon has some good questions especially with brain mets or possible brain mets the data supports the combination of Nivo+ Ipi over Nivo (opdivo) alone. Here is a link talking about brain mets from last summer, now if you don't have any brain mets then Nivo (opdivo) might be the safest way to progress without worry of as many side effects that tend to go with the combination. Where are you being treated if you don't mind me asking???https://www.onclive.com/peer-exchange/advanced-melanoma-paradigms/managing-brain-mets-in-melanoma

        • February 3, 2019 at 4:14 pm
        Conor2710
        Participant
        I’m being treated at the Cancer Center in Festus Missouri. Not far from me
      • February 1, 2019 at 7:24 pm
      marta010
      Participant

      Hi Conor – my husband was diagnosed with brain mets 7 years ago and just reached NED status in January after multiple gamma knife treatments/brain surgery/Tafinlar/Keytruda over the years.  Don't give up hope.  The Opdivo may do the trick.  What is your Braf status?  If positive, you may want to consider adding Tafinlar/MEK to the mix as it may quickly reduce the tumors. Do you have an MRI scheduled to check out what you suspect may be happening in your brain?

      Ann

        • February 3, 2019 at 4:12 pm
        Conor2710
        Participant
        Honestly I have no idea what those acronyms/abbreviations mean but I go see the brain oncologist on the 6th for follow up
        • February 3, 2019 at 11:59 pm
        Bubbles
        Participant

        Hey Conor,

        Dealing with melanoma can seem like folks are speaking a foreign language for sure.  Here is a primer of bascic current melanoma care that I put together that you may (or may not) find helpful:  https://chaoticallypreciselifeloveandmelanoma.blogspot.com/2017/08/melanoma-intel-primer-for-current.html  

        At the bottom of that post is a link to a list of abbreviations/acronyms that I put together, but here is a direct link to it, if you like:  http://chaoticallypreciselifeloveandmelanoma.blogspot.com/2016/03/melanoma-abbreviations-and-random.html  

        Both posts may be helpful in giving you some background info so that you can learn more at your upcoming appointment.  Ask more questions as you have the need.

        Just so you know….as horrible as melanoma is…and we all know that it sucks great big green stinky hairy  wizard balls…there is hope.  I am glad that you have gotten started on Opdivo.  I was diagnosed with Stage IIIb melanoma in 2003.  Progressed to Stage IV in 2010 with brain and lung mets.  However, after having surgery to my lung and radiation to the brain met….I got into an Opdivo trial before it was FDA approved as it is today.  After 2 1/2 years of Opdivo, last dose in June of 2013, I remain NED (thats No Evidence of Disease) for melanoma with no further treatment!!  This can be you, too!  Hang in there.  Celeste

      • February 1, 2019 at 11:17 pm
      lkb
      Participant

      Welcome, Conor. Lots of melanoma veterans on this forum. Use the search tools, read profiles and keep posting–all of this will help you in the hope department. Plus, are you working with a melanoma specialist you trust? Have you considered a second/third/fourth opinion from a melanoma specialist? 

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