It was almost exactly a year ago that I was faced with some hard decisions. After four years of complete stability, one tumor in my supraclavicular lymph node had decided to go rogue and quit responding to the immunotherapy I was on. I named it “Wayward Tumor.”
From one clinical trial to another
When my oncologist told me that I was being taken off of the clinical trial because of tumor growth, I wasn’t particularly worried. That’s just how much confidence I had in him having something else for me to try.
Back in 2013, I opted to join a clinical trial. My first-line chemotherapy treatments had worked briefly, but once we stopped the treatments to give my body a rest, the tumors took full advantage and made up all the ground they had lost during treatment.
Joining a clinical trial
When I joined the trial, I had basically run out of other options. I could have opted to undergo docetaxel treatments, but my first oncologist had dissuaded me. He told me that docetaxel often was not as effective as my first-line treatment and that people frequently did not tolerate it as well. I had been extremely ill while undergoing my first-line treatment. I chose not to participate in a treatment where there was a big possibility that I would feel even worse.
A year ago, my medical oncologist walked into the office and informed me that he was pulling me out of the trial that I had been in for four years. I was dumbfounded and devastated. I was set to receive Opdivo Infusion #99 that day and, in my mind, was already celebrating my 100th treatment. Milestones notwithstanding, my cancer was growing and changes had to be made.
I remember the days following my diagnosis as if they were yesterday. I was told I might not have very many more days here on earth, so I decided I better enjoy and make the most of the days I had. And, even though my initial prognosis was only four months, I somehow decided from the very beginning that I was going to try to bring hope to others with this disease.
Don’t let the diagnosis steal your joy
When my mom, husband and I showed up for my first chemo treatment, I wore a t-shirt that said, “It’s about the journey” and that’s the attitude I have tried to adopt. I asked my husband to video my first chemo treatment. I wanted to post it online to document the fact that a dire cancer diagnosis doesn’t have to be scary, doesn’t have to steal your joy.
I was diagnosed with stage IV lung cancer back in October 2012. While I am feeling quite well most of the time now, we went through a period of time when it was far more touch and go. I thought it might be helpful for you to hear from me, as a patient.
In lots of ways, I doubt my husband and I have experienced the same frustrations as many of you have. I have been mostly healthy, despite my dire diagnosis. So, I may not answer many of your questions with this missive, but I hope I address at least a few.
When I was diagnosed with lung cancer, I didn’t know anyone else who was still alive and fighting the disease. I started searching around and ultimately landed on a group where I feel totally at home – it is called WhatNext.
I am going to post two links below that will help you know if you think WhatNext will be a good fit for you. I go to a lot of different lung-cancer related forums, but I spend most of my time on WhatNext. It feels like home to me.
On WhatNext, there are caregivers and loved ones, survivors, and people from the medical field for all kinds of cancer from skin cancer to liver, lung, or lymphoma cancers. Take a look at the information below and please join, if it sounds like a place you’d like to be a part of!
This link tells you a lot of the benefits of the group in an advertising way: https://www.whatnext.com/ilp/lungcancer/?campaign=AMLC
SandiA is a Stage 4 Melanoma survivor who is active on the site. She tells you why she loves WhatNext so much!
Let me know if you joined the group because you saw this post! I look forward to seeing you! I think you’ll love it there as much as I do!
Have you ever considered participating in a clinical trial? If you haven’t, you are in the majority. In fact, according to Patient Advocate Foundation,“ less than 5 percent of adults diagnosed with cancer each year will get treated through enrollment in a clinical trial.”
I find this stat extremely sad for two reasons. The first is that without participants clinical trials cannot be conducted. If treatments cannot be tested in trials, they will never be approved by the FDA, so they will not be available to cancer patients. A study by Fred Hutchinson Cancer Research Center and the University of Washington found that nearly 20 percent of publicly funded clinical trials fail due to lack of participation.
originally published 10/6/2016
I have to begin this blog on a sad note. There have been personal and national tragedies that occurred since I agreed to write a blog about hope and optimism. I lost three friends to cancer in a week’s time … and last night, my city lost five police officers who were gunned down in cold blood while doing their job of overseeing a peaceful protest march. Sometimes, events make it hard to see joy and optimism, but it’s still there. We just have to look a little harder.
Even though I will miss my friends badly, they each outlived their prognosis for stage IV lung cancer by years. The reason they beat the statistics and had years added to their lives after being diagnosed is because of the huge advances being made every single day in new treatment options.
originally published July 14, 2016