When I went to a consult about joining a clinical trial at UTSW back in 2013, I never, ever dreamed I would still be here, writing this blog!! Remember, I was only supposed to live 4 months. I had already outlived that prognosis by several months in July 2013.
When I first started the clinical trial in August 2013, the drug I received had only numbers for a name. I had no idea what kind of drug I was receiving. Immunotherapy was not a word I had ever heard.
As time went on, I participated in a number of surveys conducted by pharmaceutical companies. The companies were seeking feedback from cancer patients about upcoming advertisements. I began to connect the dots … and realized that the test drug I was receiving was the newest and latest therapy – immunotherapy.
Not everyone has the same results as I do. In fact, my medical oncologist has said that the biggest side effect of immunotherapy is disappointment. Because it is touted these days as the “cure-all,” patients whose cancer doesn’t respond positively suffer great disappointment. Sometimes, they also live with side effects they hadn’t bargained for, such as pneumonitis or impaired liver or kidney functions. No drug is completely safe and immunotherapy is no exception.
But, for me … and for many like me … immunotherapy is a true miracle drug. The drug I get is Opdivo, aka nivolumab. Another was introduced at about the same time, Keytruda (pembrolizumab). Both of these drugs received FDA approval for use against non-small-cell lung cancer like I have at about the same time. Both had already been approved for treatment of metastatic melanoma prior to being approved for lung cancer. Other immunotherapies have now been approved by the FDA for treatment of various cancers, including lung cancer. There are other drugs currently in trial. This field of research is exploding!!
That’s good news for those of us with cancer. Five years ago, immunotherapy wasn’t considered a viable option for treating cancer. Today, it is offering great hope to researchers, physicians, and most importantly, patients and their families and loved ones.
But, this is not really an advertisement for immunotherapy. I do encourage you to speak to your oncologist about the possibility of being treated with this miracle drug, though. It might not be the right treatment for you, but it just may be!
Opdivo is infused every other week. That’s a lot of doctor-going, especially for a person like me who avoided doctors like the plague prior to being diagnosed with lung cancer. Every visit required extensive blood tests. At first, I had to have CT scans every 6 weeks. As the years went by and my tumors remained stable, we were able to extend the amount of time between scans to three months. I had so many CT scans that I learned to drink barium without gagging. That’s too many scans!!
At first, no one knew what in the world I was talking about when I said I was getting immunotherapy. These days, I imagine most lung cancer patients, and possibly patients with other cancers, are familiar with the term, if not with how it works.
Opdivo gave me back my life. I was very sick when I underwent traditional chemotherapy. With Opdivo, I suffer a bit of fatigue on the day of the infusion and some minor tiredness on the day after the infusion, but that’s about all. (My thyroid no longer works properly, a common side effect, so I have to take levothyroxine every day … That means I constantly fight a weight problem, but that’s comparatively minor (and I do have to remind myself of that quite often!).)
When I reached treatment #75 or so, I began to look forward to a big centennial celebration!!! How many other patients are out there who can say they have gotten 75, much less 100, immunotherapy infusions? I wondered about that then. I still do wonder. How many of us are there who have basically been with the drug since inception?
When I finally reached treatment #90, it was a forgone conclusion that I soon would be joining the centennial club. And, I looked forward to it with relish. I’m not really quite sure why it seemed so important to me to get to that 100th treatment, but it was a goal I really wanted to reach.
A Bump in the Road
Imagine my shock and distress when I went to see my oncologist prior to receiving my 99th treatment and learned that I was being pulled out of the trial and I would not be getting any more Opdivo! After over four years, a tumor in a lymph node in my neck finally outsmarted the nivolumab. The drug was no longer controlling it. My doctor could not and would not continue the treatment.
What????!!! I cried. I rarely ever cry. But, I cried.
Most normal individuals would have cried because their cancer was once more on the move. Not goal-oriented me. Oh no! I cried because I was just two treatments away from reaching Infusion #100. My heart was set on it. It had been a foregone conclusion that I was going to be celebrating #100. I was nearly frantic in trying to figure out how I could still get those two additional treatments (I never looked past Treatment #100. Treatment #101 held no awe for me … just that #100 was important.)
I’ve already blogged previously about this bump in the road. In short, after much consideration, I decided to have the growing tumor irradicated. I am slowly blogging about the process, if you’re interested in reading about the experience.
Sooooo … How did I Reach #100???
So, if I was pulled from the trial, a tumor was growing, and I went through a different course of treatment, you may be wondering how I managed to reach Infusion #100. Well, it is really simple!
My medical and radiation oncologists both agreed that I should resume Opdivo treatments after completing radiation. The drug has controlled the tumors in my lungs for about 4-1/2 years. The logic of the oncologists is that it would be foolish to abandon a protocol that I have responded to so well. The tumor that outsmarted the drug, the tumor I called Wayward Tumor, has presumably been killed with radiation so we only have to worry about the tumors in my lungs at this time.
I resumed Opdivo treatments at the end of September after a break of several months. My blood test results remain perfect. I continue to feel great after a treatment. We’re back in the saddle again!!!
Imagine my surprise when I arrived at the doctor to resume my Opdivo treatments and my oncologist, his nurse, and my nurse practitioner came in bearing a 100th Infusion gift. If I haven’t said it before (I have), I will say it now: I have the most awesome medical team ever!!!
Shine is perfect! The lady who designs the sculptures says this about Shine:
“Shine could be a congratulatory piece for a milestone reached, or a healing piece to show support and belief in someone. I wanted the form to be visually uplifting… a little reminder of personal goals, met. I embellished the surface with gold to suggest inner light and energy.”
Enough said! There’s absolutely nothing more I can add except, “Isn’t she beautiful?”