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6 years NED

Forums General Melanoma Community 6 years NED

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      So, it’s been a REALLY long time since I’ve been on this forum. Somebody on here once said they never get upset about the people who stop visiting the forum because they are off LIVING their lives. I thought to myself I would not be one of those people, I will always visit the forum so I can stay up to date and perhaps help newbies.

      Well, guess what? I became one of those people. And yes, I have been actively LIVING my best life!

      I’ve had melanoma twice, the first was in 2006 and surgically removed with no lymph node involvement. I was 8 years NED until it came back and I was diagnosed in January 2015 with stage IV. I had another surgery for the recurrence in my back, but started in a clinical trial at Hopkins for the many metastasis. I was in the last leg of the ipi/nivo trial, but I only had one dose of the combination of drugs because I just couldn’t tolerate them both. What we know now is the drugs gave me an allergy to iodinated contrast used in CT scans, which resulted in me having high fevers, nausea, and labored breathing. They just kept scanning me though to figure out what was wrong with me, which only made me sicker. Once we figured it out, they premeditated me with prednisone before scans, and it helps. Once I was able to start treatments again I received nivo every two week for two years. And I had a FULL response!

      So as of last week I am now NED for 6 years! Sure, I have some lasting side effects (Type 1 Diabetes is the big one!) but I am able to maintain all of them. Diabetes is a tough pill to swallow but with CGMs and insulin “pod” pumps, I am getting MUCH better at maintaining a good A1C. Nothing says sexy more than a middle aged woman with patches and devices adorning her abdomen 😆

      Also, I learned I have a MITF gene mutation as well as the BRAF gene mutation. MITF puts me at increased risk for melanoma and kidney diseases. I was the first in my family (that we know of) with melanoma, but chronic kidney disease is a strong factor in my family history. I’m on top of it though, as I NEVER miss a checkup. I actually like going now, as the staff and my doc will often introduce me to new patients as they show me off like a gold medal! Who am I to argue?!

      I’d say I promise to check in here more often, but I’d be lying. I’m truly terrible at maintaining ongoing online communication. I apologize in advance for the next hiatus I take!

      With hope,

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          Congratulations! I need to hear this right this minute. Thank you.
            Congrats, Eileen! Enjoy. celeste
              Congratulations!! Thank you for sharing! It’s always great to see good news!
                  Wonderful. I love these LIVING stories.
                    I am so happy for you! Thanks for sharing your positive news! For those of us still in the trenches it’s great to hear long term NED. Whoo hoo!
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