Forever changed – Quality of Life after Melanoma (and how to help) – ASCO 2021

Grateful for this, Bubbles.
I’m starting Ipi/Nivo on Friday so many of these issues are uppermost in my mind

Hey all, I guess this one hits close to home. When it comes to stage IV melanoma, I was one of the really lucky ones. I was stage IV with just one metastatic tumor and an unknown primary. To date all scans have shown my organs to be clear and have been NED for over three years. That being said, post diagnosis and treatment have been extremely difficult for me. I sailed through treatment with NIVO (until colitis stopped that) working the whole time and never taking much time off. But post treatment not so good. All kinds of phantom side effects from minor ones (dry mouth and eyes) to serious ones (joints, stomach issues, chronic pain and increased anxiety levels) my life is just not what it was and I miss that. And I think the mourning/missing that former life make it worse.

I stay on this forum and a few others to read and talk to others who have been there, as no one else can seem to relate. Those of you who know my story (first wife had breast cancer, then died of scleroderma and second wife and I both had cancer at the same time in 2018) also know that the last 10 years have been pretty rough. But reading Celeste’s blog and reaching out with questions and giving support to others sure helps. Also, as Les says, having a support system with friends and loved ones who step up and step in makes a huge difference. If you don’t have a support system, talk to your treatment center they might be able to help out, thinking praying and standing by to support all of you as you have supported me the last few years.

Ted

 

Good on you, Ted (as we say here in England). Thanks for posting and I wish you well

Tim