› Forums › General Melanoma Community › 11 Year Stage IV Anniversary – not NED anymore, but very much alive!
- This topic has 12 replies, 6 voices, and was last updated 12 years, 3 months ago by
LynnLuc.
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- June 5, 2011 at 12:42 am
Hi everyone,
On June 4, 2000, I became officially Stage IV with a lung met. It was resected, and I was blissfully NED until this February, when I was diagnosed with multiple bone mets, a couple of sub-q's, and a nodule in the lung.
I won't kid you, the news was a bummer – after all those years I was thinking MM was in the past, and that something else was going to be the end of me.
Hi everyone,
On June 4, 2000, I became officially Stage IV with a lung met. It was resected, and I was blissfully NED until this February, when I was diagnosed with multiple bone mets, a couple of sub-q's, and a nodule in the lung.
I won't kid you, the news was a bummer – after all those years I was thinking MM was in the past, and that something else was going to be the end of me.
But I got my act together, and contacted my old guru Dr. O'Day (now at the Angeles Clinic in LA). After a lot of poking and hoop jumping, I qualified for the BRAF/MEK combo trial. I'm now starting my 4th week, with very few side effects. The funny thing is that my bone met symptoms, as well as my sub-q's, have disappeared – even before I started the trial. I'm taking this as good news – I'll get scans in 4 weeks, hopefully these will confirm the disease is in retreat.
I used to post annually on my anniversary date, not to brag, just to tell people that this is surviveable. I'm doing the same this year, and hope to keep on doing it year after year!
Best wishes to all,
Harry
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- June 5, 2011 at 12:50 am
Hi Harry,
Sorry to hear of this development, but it's nice to see you posting anyway! I am happy you were able to connect right away with a doc you trust and get started in this promising trial. I hope it works well for you and that you can kick back with NED for another couple of dozen years.
You've been successful in the past, so I hope you will be again!
dian in spokane
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- June 5, 2011 at 12:50 am
Hi Harry,
Sorry to hear of this development, but it's nice to see you posting anyway! I am happy you were able to connect right away with a doc you trust and get started in this promising trial. I hope it works well for you and that you can kick back with NED for another couple of dozen years.
You've been successful in the past, so I hope you will be again!
dian in spokane
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- June 5, 2011 at 2:53 am
Hi there Harry
My BRAF buddy I was just thinking about you this morning! Cruising time is coming up – how exciting.
Glad to know the side effects are going well – they are pretty mild. June 20th will be one year since I was dx with MEL. Not a day I care to relive. Scan day will go fine – I have faith. I go back for my 4 month scans on the 16th.
Have a great time – will be thinking of you.
Hugs and Smiles
Dawn
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- June 5, 2011 at 2:53 am
Hi there Harry
My BRAF buddy I was just thinking about you this morning! Cruising time is coming up – how exciting.
Glad to know the side effects are going well – they are pretty mild. June 20th will be one year since I was dx with MEL. Not a day I care to relive. Scan day will go fine – I have faith. I go back for my 4 month scans on the 16th.
Have a great time – will be thinking of you.
Hugs and Smiles
Dawn
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- June 5, 2011 at 12:16 pm
Hi Harry,
Well sorry to hear about the blip on your melanoma radar but you have an amazing immune system and good for you to get into the BRAF/MEK treatment. Keep coming back and letting us know how you are doing!!! oh and keep on living LIFE!!!!
Vermont_Donna, stage 3a, NED after Yervoy
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- June 5, 2011 at 12:16 pm
Hi Harry,
Well sorry to hear about the blip on your melanoma radar but you have an amazing immune system and good for you to get into the BRAF/MEK treatment. Keep coming back and letting us know how you are doing!!! oh and keep on living LIFE!!!!
Vermont_Donna, stage 3a, NED after Yervoy
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- June 5, 2011 at 3:07 pm
Harry,
Wishing you the very best of luck with this treatment! My hubby's onco is the head of the trials dept at MGH in Boston and said wonderful things were happening on that trial and that many, many people were seeing almost complete remissions.
Here is hoping you are one of them! 🙂
Michelle, wife of Don, Stage IV
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- June 5, 2011 at 3:07 pm
Harry,
Wishing you the very best of luck with this treatment! My hubby's onco is the head of the trials dept at MGH in Boston and said wonderful things were happening on that trial and that many, many people were seeing almost complete remissions.
Here is hoping you are one of them! 🙂
Michelle, wife of Don, Stage IV
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