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An image of a person switching off the light in a treatment room, with a chemo chair in the background.

Why Would A Stage 4 Patient Go OFF Treatment?

Everyone knows that lung cancer is a bad diagnosis, right? Everyone knows that stage 4 of any cancer is a bad diagnosis, right? And everyone knows that a diagnosis like that means non-stop harsh and awful treatments, right? Well, yes, yes and not so fast.

Evolving treatment options

Things are changing rapidly in lung cancer land. In the not distant past, almost all stage four patients were treated with chemotherapy or radiation, often both. And that often brought with it hair loss, nausea, significant gastrointestinal troubles, peripheral neuropathy, extreme fatigue, and any number of other difficult side effects.

Some patients were “lucky” enough to be treated with tyrosine kinase inhibitors (TKI), particularly if they were found to have certain tumor cell mutations like EGFR, ALK or ROS1. The drugs developed to specifically target those mutations were often less harsh than chemotherapy, but still had potentially challenging side effects.

Taking a break

Thankfully, for a good number of patients, these various drugs do work, at least for a time. Unfortunately, that doesn’t stop them from taking a major toll on the patient. As the saying goes, “sometimes the treatment is worse than the disease.” As a result, it can be a good idea in some cases, when a patient’s tumors have shrunk or remained stable for several months running, to consult with one’s doctor about taking a break from treatment just to recoup physically and mentally.

I did this after two successive series of different chemotherapies broken by Avastin maintenance therapy. My tumors had shrunk in size, but I had been dealing with all of the things chemo brings to the table for the better part of one and a half years by then. In this case, my doctor was the one who suggested a break in treatment for a time that would last as long as my tumors remained reasonably in check. I happily agreed, and for the next 15 months, I only visited the cancer clinic every three months for follow-ups after CT scans.

Whether or not to go back on treatment

Eventually, I started new treatment because a trend of slow tumor growth had become evident over those 15 months. That next round of various treatments ran for the succeeding 27 months, the last 13 of which were part of a clinical trial which brought with it very challenging side effects.

This time, I made the decision, after much internal contemplation, research, and discussion with various members of my medical team, to end my trial participation and thus the treatment I was receiving. Because my tumors had shrunk at the start of the trial and then remained stable for a full year, I felt it was reasonable to consider taking another break from treatment. I consider myself tough and determined, but also human and fragile to an extent. This thing…this treatment was beating me down. It’s hard to continue the fight when your body and mind are screaming “Enough!”

My doctor began to raise possibilities for new treatment, but when I strongly suggested that I felt another break was in order, he readily agreed that this was a rational alternative. That was at the end of last December and I am now six months into this break period with two stable scans under my belt. I will ride this out as long as possible, basing my future treatment decisions on a combination of scan reports and what my body tells me over time.

Listening to your body

The moral of this story is that lung cancer patients need to know their bodies, their side effect tolerances, and their mental ability to forego treatment if they want to include this as a consideration. Then, if their disease status makes this a reasonable possibility, they should take it to their medical team, just like I did. Oncologists know that sick patients have a much harder time fending off cancer than “healthy” patients, and severe side effects definitely make for sick patients. So, I personally aim to be a healthy patient. How about you?

Editor’s Note: We are extremely saddened to say that on June 8, 2019, Karen Loss passed away. Karen was a valued member of the lung cancer community and an incredible advocate and avid writer. 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.


  • Yolanda Brunson-Sarrabo moderator
    10 months ago

    That can be such a hard decision I can imagine for so many in this situation. At the end of the day despite the doctors directing the course of treatment, the patient has the final say. As you mentioned the body takes a beating with the constant tribulations it takes to stay alive. Yes, listening when enough is enough, the body has a big say in the matter. Nice piece!

  • maggiev
    10 months ago

    It will be 2 years this June that I was diagnosed with stage 4 lung cancer that spread to my brain, and bones,I was on Ketruda until Oct. 2018,but suffered very severe side effects ( daihrea) and was very dehydrated and my medication was changed to Afatinib tabs 30 mg. That almost killed me.i was unable to eat because of the mouth sores, causing me to lose a lot of weight and was hospitalized for 5 days. My Dr. lowered my dose to 20 mg. And this seem to be working, shrinking the tumors on my adrenal glands. I feel great other than shortness of breath and a little diarrhea occasionally, I live from day to day not knowing how long this medication will work,hoping I will be around for a long time.

  • Karen Loss author
    10 months ago

    Thank you for sharing your story, Maggie. We all have one to tell, don’t we? I wish you the very best going forward…successful treatments with as few side effect troubles as possible along the way. May you have many more years of healthy living in your future.

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