I'm NED, Now What?
Last updated: August 2021
I am not a fan of abbreviations when used and not explained. If I am scrolling through a Facebook group and find a topic that I want to read and someone uses an abbreviation in the comments without explaining it, I immediately start scrolling again. There are abbreviations for everything! When I found out what NED meant I was excited and determined to get to that point. NED stands for No Evidence of Disease and this is achieved when no cancer appears on scans and other ways we are monitored.
My road to NED
My road to NED was bumpy. Considering that my treatment history has been extensive over the past 7 years. I have had TKIs, chemotherapy, radiation, surgery and I have also participated in two clinical trials. With each treatment, I had hoped that it would get cancer to a no evidence of disease state.
I am one of the lucky ones and was deemed NED after participating in the second clinical trial. It is a funny story because I started the trial in December 2017 and stayed with it for about 11 months. I only stopped the trial drug because I had developed some serious neuropathy in both my hands and feet. I did physical therapy to get some movement back on my feet. My feet and hands are still sensitive to touch but are not nearly as bad as when I was in the trial. I started going to my follow-up appointments every three months and nonchalantly my oncologist mentions to me “well you have been NED for 20 months”. This was a while after I had stopped the trial and I was under the impression that there was still disease and that we were just making sure it wasn’t growing.
This appointment was pre-covid and my sister was with me. We always discuss the main points that were talked about during the appointment and when we got to the car that was the first thing we talked about. I was beyond excited to share this news with my parents and husband.
Thinking about the long-term
Now that I am NED I have been going longer between having scans. I had been going every three months and this last time I went four. I had my appointment in May and my oncologist asked as I was leaving “do you want to do 4 or 6 months?” and in my haste to get out of there I said four. I got home and thought about that a little longer and sent a message via MyChart the next day asking if six months was still an option. The rest is history and I do not have another appointment for six months! It helps that now I do not have to waste a vacation day from work to go to scans!
I fully understand that this can be long-term (and that is my goal) but also that it can be taken away from me at any point. I do not take for granted the ability that I have to live comfortably without pain and as normal as someone with stage IV cancer can live.
Beside manner matters! What has your experience been?