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A little hope
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A little hope

› Forums › General Melanoma Community › A little hope

  • Post
    • July 27, 2019 at 7:29 am
    Kingdom5454
    Participant
      I remember when I first joined this website I was just looking for a sign of hope. Just looking for someone who had the same surgeries, diagnoses , or anything I could relate my story to with a positive outcome. I’m coming up on three years and just had clean scans. I was diagnosed with stage IIIc melanoma and not a good outlook. I had the highest Motoic(sp)rate that any doctor in Chicago has seen or I have found on this website. It was 50! My doctors were sure they were going to find it somewhere else in my body. I was told hope for the best but expect the worst. And that it wasn’t a fact of if it was coming back it was a when it comes back outlook. I had a complete neck dissection where they removed 98 lymph nodes and the cancer being in six of them . I had four high doses of yervoy. Inflamed my pituitary knocked out my thyroid and adrenal’s. my son at the time was just a little over two years old.
      I was scared shitless to say the least!

      Fast forward to three years I’m still here now with two kids my daughter is now nine months old. I still suffer daily with my adrenals and thyroid but you know what I’m still here. I just want someone to read this that is nervous or scared and know that there is hope.

      I pray every day for each one of you. I pray for the ones we have lost and for the families that have suffered. I pray that sometime soon there will be a cure. I know some people feel alone and they don’t have anyone to talk to you but this board is truly amazing. Some people on this board take a lot of time out of the day to respond and comfort people as best as they can. There’s too many names to list but those people are amazing ! I don’t post on here often and I’m sorry for that I’m just not good with coming out of my own shell about this.

      God bless everyone

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        • July 27, 2019 at 1:56 pm
        jbronicki
        Participant
          Wonderful news and congratulations on the new addition to the family! Wow, 50 is fairly high mitotic rate to say the least. I know there is discussion and various research about the predictive/prognostic power of mitotic rate since it is the rate of division of cells and hence likeliness to spread and growing faster (for you to the lymph nodes), but I think now that you have had treatment and powerful treatment at that with IPI that is the most important part and hopefully had kicked melanoma to the curb. I’m glad you were able to stop this in the tracks, get through the treatment and living NED (albeit with side effects and thryoid stuff can be rough for sure) with two wonderful kids and family. Congratulations!
          • July 27, 2019 at 3:05 pm
          lkb
          Participant
            Thanks for adding your story to the mix. And big congrats on the NED!
            • July 27, 2019 at 9:17 pm
            Suzana65
            Participant
              Thank you fir sharing. It brings hope to many.
              • July 28, 2019 at 10:09 pm
              MelanomaMike
              Participant
                Hi Kingdom, WOW! that’s alotta nodes and area around your neck they took out, clean margins is the name of the game though!! I didn’t browse your profile ( I will after this) but, your NED today? My hats off to you being a mom and staying strong juggling treatment and taking care of them!! AND YES! that Yervoy can really kick butt on the “Glands”!! Ito did the Ipi but with Nivo as a combo and the Nivo left me alone but his partner Yervoy killed my Adrenal & pituitary glands from making Cortisol on its own, (I take 10mg morning, 10mg afternoon of Hydrocortisones) if I don’t take it I’m screwed! I had a colonoscopy a few weeks ago and I purposly didn’t take it (2 days I missed) so my colon was clean as a whistle, I shouldn’t have come to find out, I was a mess…paperwork said ONLY HEART MEDS!…anyways, thanks for your post, Hope is a big deal and a hot commodity around here….take care
                  • August 2, 2019 at 9:45 pm
                  ourvan
                  Participant
                    Thank you for coming “out of your shell” to share! I originally came to this site seeking comparisons as well and did get a great deal of hope from people who shared their story (worse than mine) and were here to tell their tale. We all know the panic and fear that sets in with our diagnosis, and it brings great hope and solace to find the many options available to us that have great results. Congratulations on the new little one, and may you enjoy good health and a long life.
                    laurie
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