15 + years Melanoma survivors?

This topic has 8 replies, 8 voices, and was last updated 3 weeks, 2 days ago by Nicky.

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- February 8, 2020 at 6:53 pm
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fedupnurse67
Participant
Are there any people on here who have had Melanoma for 15 plus years?

Are there any people on here who have been treated with interferon?

How long have you been surviving with Melanoma?

Just trying to get a few people in my life to understand the seriousness of this diagnosis. Just because I don’t act or seem to be “sick” doesn’t mean I’m not fighting for my life.

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- - February 9, 2020 at 4:06 am
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  F-melanoma
  Participant
  My 11 year cancerversary is February 11th. I did do one month high dose interferon in 2009. I have had several recurrences., surgeries, one clinical trial, T- vec injections, and now I’m on Opdivo. I’m stage 3C and have had over 20 PET/CT, and MRIs. It’s the gift that keeps on giving. Rollercoaster ride is an understatement.
- - February 9, 2020 at 1:48 pm
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  Bubbles
  Participant
  Stage IIIb in 2003. Stage IV in 2010. LIVING with melanoma – 17 years. I declined interferon since the data did not convince me of its benefit even then. Here’s my story written when I was 12 years into my journey if you are interested: https://chaoticallypreciselifeloveandmelanoma.blogspot.com/2015/04/health-monitor-magazine-focuses-on.html
  
  This post addresses the feelings I have experienced as the “healthy” appearing person in the room despite having a deadly disease: https://chaoticallypreciselifeloveandmelanoma.blogspot.com/2014/02/tears-and-melanomatheyre-not-always-sad.html
  
  In 17 years, I have learned not to worry about those who don’t “understand”. Folks either do or they don’t. If they are close to me, it is likely that they have been informed of my diagnosis, treatment, and its ramifications. What they do and say about it after being informed is on them. Yours, celeste
- - February 9, 2020 at 8:35 pm
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  Julie in SoCal
  Participant
  Hi Donna!
  
  There’s a bunch of us still hanging around!!!
  
  I started out stage 3a in June 2007. So not quite 15 years of living with Mel. I did high dose interferon because I was new and scared and wanted to do something. Even though I was (heck, still am) a researcher who knew how to read stats, I don’t think it was my brain was making the decisions then. I too have had many recurrences; too many to count. But I am currently (as of Tues!) NERD for melanoma! All good news here!
  
  Yes, it is hard for folks to understand the seriousness of the diagnosis. We look good, don’t we! Oh, and it’s not JUST skin cancer!!! I’ve also found that because I still have my hair, heck, I’ve never lost it, people have a hard time seeing me as a cancer survivor. However, I’ve also found that there are a few precious people out there, who have, somehow faced their fears of cancer and are amazing companions on this journey. I have found friends I never even know I had! And wouldn’t trade them for anything! They see the tiredness and the many time I go to the bathroom and they understand.
  
  Also It took me a while to learn to appropriately translate the interaction of others. Yes, there are jerks! And you can run into them anywhere! But there are also people who care (they are reaching out to you), but being reminded of their own mortality and fear of cancer gets in the way of their expression of love and they sound like jerks. It took me quite a while to learn the difference.
  
  This is just my story. I hope you, too have found those precious people and you can hang on to them when you need to.
  
  Shalom,
  Julie
- - February 13, 2020 at 9:45 am
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  swissie
  Participant
  Also not 15 years, but 10!.
  Melanoma in 2008, Stage IIIB in 2009.
  Double blind trial with ipi in 2009 – 2010.
  After unblinding last year i found out i was on the placebo – part.
  
  So stage IIIB WITHOUT treatment since 2009
- - February 15, 2020 at 3:23 am
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  Becky
  Participant
  My son was dx in 2009 ( oral melanoma, tongue, spread to one lymph node) . He was 21. He did the whole year of interferon and has been NED since..(..although he has not gotten a scan in 4 years.)
- - February 24, 2020 at 5:11 pm
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  almostalice
  Participant
  Almost 16 years now, stage 2c Nodular Ulcerated 6mm. No secondaries, CDKN2A+ with plenty more primaries. SLNB negative and hypothyroid, barely awake at one point with severe sleep apnea now under control.
  
  Study me 🙂
- - February 27, 2020 at 2:49 am
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  Toby0987
  Participant
  Hey-I was 3b in 2013 and nothing since then .i had the surgery and that was it-nothing else. What I found was most people cared more about their headache than my initial cancer diagnosis. Others cared because they wanted to know how they could avoid it. Others cared because they wanted to know what I did to cause it and others truly cared for me. Mixed bag I guess.
- - September 15, 2024 at 4:34 pm
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  Nicky
  Participant
  24 years (2000-2001) NED Stage 111b. At time decided to have radiation therapy instead of interferon. I have had some new melanoma moles over the years, the last one being 5 years ago so important to keep up with skin checks. Living a good life now with mild lymphoedema from the original lymph node surgery in groin.