Being NED: My Story
Last updated: March 2023
I’m in quite a few lung cancer groups on Facebook, and I often read how some members wish they were NED for lung cancer. Or, they're hoping that they will hear NED in their follow-ups. Some also hope to be NED in the future.
I have hope for them.
No evidence of disease and feeling hopeful
I must say that I’ve heard "NED" said to me - and its music to my ears. It gave me hope, and I knew there was a chance to live a long, somewhat healthy life with lung cancer. I say “somewhat” because those side effects are no jokes but, for the most part, manageable.
Now, for some, they might be NED for a long time. For others, it may only be a short time. Nonetheless, it’s nice to hear.
My lung cancer treatment NED timeline
The first time I heard NED was in March 2015, after a couple of months of taking Xalkore. But that was short-lived!
In July 2015, my treatment was switched to Zycadia because I had a small spot on my liver. But then, in December 2015, I was NED again! This time, I was NED for 4 years. Now, that was an amazing experience for me, knowing that I was somewhat in the clear for 4 years.
In November 2019, I was told they saw 2 small (foci) brain mets. I continued to have MRIs every 6 weeks for a few weeks, and then every 3 months to find out the brain mets weren’t growing.
I was stable for two and a half years, until February 2022. That's when they decided to start growing.
I was then switched to Alecensa in March 2022. It was a bit rough on my body due to the side effects. But I'm happy to say the brain mets were shrinking.
At my last MRI in October 2022, I was told they only saw one tiny spot. They couldn’t even see the second one. I’m hoping at my next three-month MRI and Radiation Oncology visit, that I hear the words that means NED: "no evidence of disease" again.
The emotions of NED
I’ve been asked, “how does it feel to be NED?” It’s sometimes hard to answer, knowing many out there probably will never hear those words. Firstly, I can honestly say it literally hurts my heart because I want everyone that has lung cancer to hear those words and experience that joy as I did.
But also, when I am told "you are NED," it brings me lots of joy and hope.
To me, NED means hope and having more time
I feel like it’s buying me more time for the next treatment so I can live longer to enjoy my grandchildren and get to do more fun things with my husband and family. It buys me more time to plan and go on those dream vacations and to see another wrinkle on my face.
To see another winter storm and experience another heat wave in the summer. To fight with myself for gaining weight and to experience foods from other countries. To basically experience things that we might take for granted.
I look forward to hearing NED again in the near future, so I can buy myself more time.
Beside manner matters! What has your experience been?