They discovered melanoma near my lungs six years ago. They couldn't operate there to remove it, and the immunotherapy (interleukin-2) wasn't shrinking it, so they radiated it. It started shrinking, got small, and then went dormant. It stayed dormant for several years, and when it started looking active again on the scans, by then Yervoy had been FDA approved, so they gave me that, and it has been dormant again for the last two years. So in my case, inoperable stage IV melanoma has not been the death sentence it used to be.
And why the XXX is the nurse telling you test results? Especially when it's bad news. That's your oncologist's job. I have always had the oncologist give me the bad news, and at the same time tell me, "So here's the next plan of action." Being left in the dark to wonder about the next plan of attack is not good. I hope you get the best treatment available.
Constance Emerson Crooker
www.melanomamama.com
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JackieK shared an experience
Oh No: I Started Having Chest Pains And Flu Like Symptoms So I Went To The ER And Had A Chest CT Scan Done. At First They Said There Was Nothing And They Couldn't Figure Out Why My Chest Was Hurting, But Then My Nurse Came Back Into The Room And Said Some Melanoma Was Found InMy Lungs. I Started CryinG Instantly And Felt Like This Was It. This Was How I Was Going To Die. Then They Came Back In My Hospital Room The Next Day And Said That They Had Made A Mistake And That The Cancer Was Onl In My Layers Of Skin I My Chest Area. I Was So Relieved That It Wasn't In My Lungs But Then Now I Am Still Upset Because I Have Been Taking My Miracle Chemo Pills And Now I Know That They Have Quit Working.
3 Comments-
melanomamama
almost 7 years ago -
Keith59
over 6 years agoJackie, I know those exact feelings my friend. CT scan revealed a baseball size tumor in my chest directly under my heart and pressing into my lung. When they told me...it's as if I went into a different state of consciousness. That's been six months ago. I just finished up 4/4 rounds of Yervoy. New scans next week to see what is happening. Life isn't over Jackie...the way you use to view life may be over...but you are alive! You will like most change your mindset and outlook on life now. Happiness is still all around you.....don't get to caught up in the doom and gloom so that you miss out. Stay strong.....you can do this!
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JackieK started following
User: blueberry327
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JackieK started following
User: barryboomer
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JackieK shared an experience
Decision Point (change in treatment): I was taking the ipilimumab treatments for three infusions out of four, but it wasn't working and the cancer in my abdomen kept getting worse and worse so I switched back to the vemurafenib treatment and within a few days I was noticing that most of the tumors had shrunk again and I had little to no pain. Thank you vemurafenib!
1 Comment-
SunnyB
over 6 years agoHi Jackie,
Can you tell me for how long you have been off from venurafenib? weeks or months? its good that it worked for you for the second time as well. Can you pls ask your doctor what would he suggest to sy (like me) to whom venurafenib is no longer a possibility? I would be very curious and it would be helpful to see more advices.- Thanks a lot!
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JackieK started following
Question: Life with Venurafenib