Person taking off old, worn hiking boots and putting on new ones for the journey

Beginning All Over

How does it feel to be in treatment for over 5 years and all of a sudden things change? Not from progression as one might think. I have been through surgery, chemotherapy, radiation, more chemotherapy, and then immunotherapy. Actually, immunotherapy has lasted almost four years. However, I suppose all good things must come to an end.

Stopping my immunotherapy

This past week I was told that I am being taken off immunotherapy due to a severe reaction I have been having for the past six months. Earlier in the year, after treatment, all of a sudden a blistery, itchy rash started appearing on the palms of my hands and spreading up my fingers. I have seen a dermatologist and two different oncologists. We have tried a multitude of steroid creams with no effect. The most productive treatment has been 60 mg of Prednisone daily, which we all know is not good for our bodies. So the decision was made...stop immunotherapy.

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Starting from square one

I will be beginning all over as if I have just been diagnosed. CT scans of chest and abdomen. Bone scans. Liquid biopsy. It has been a bittersweet few days as immunotherapy has continually shrunk my tumors by at least 1 mm every three months. My brain knows that this is the best thing for me however, it is very upsetting to know that at this moment we do not know what cancer drugs to try and what will work.

Cancer takes its toll on everyone

Cancer of any type shows no mercy. It knocks on your door and busts into your life without invitation and then inches its way into every aspect of your being. We as patients learn along the way how to deal with the ups and downs but truth be told, even when a treatment is working, we are still afraid. And it is just as relentless to our caregivers and our family. They want to help and there is really not a lot they can do. As a patient, we need you to listen to us, be patient with us, and comfort us. And as a patient, I want my caregivers and family to be just as honest with me.

I had to call my 7 children and give them the news that I am no longer in treatment and starting all over again. It was the hardest phone since my initial diagnosis in 2014. I was truthful and open with them and let them lead the conversation. If they wanted more information, I went into detail. A few of my children, and I know which ones, usually only want a sentence, "they stopped my treatment." It is up to them to ask depending on how much more information they want.

New beginnings can be good

So, a new beginning is ahead of me. I can only hope all these tests will help us determine if I have a genomic mutation. Testing in 2014 showed none but we know so much more about lung cancer today. I aim to come out of this fighting and a better person. Starting over is sometimes a good thing.

Editor’s Note: We are extremely saddened to say that on January 28, 2020, Jennifer Toth passed away. Jennifer was a passionate advocate for the Lung Cancer community. She will be deeply missed.

This article represents the opinions, thoughts, and experiences of the author; none of this content has been paid for by any advertiser. The team does not recommend or endorse any products or treatments discussed herein. Learn more about how we maintain editorial integrity here.

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