Has anyone stopped Immunotherapy after two years?

[Lmodge]

I’m writing an article for Cancer Today on stopping immunotherapy after two years.

The article is based on a 2023 study, which I linked below. It shows that one in five patients with advanced Non-Small Cell Lung Cancer discontinues immunotherapy after two years in the absence of progression, and the study notes there isn’t a significant difference between patients who received fixed duration.

I’d love to chat with someone who has personally discontinued immunotherapy after the two-year mark. Specifically, I’d like to know what you think of these findings as a survivor. You’ll be credited in the article, of course! Please let me know if you're willing to chat with me!

[Karen_L]

I'm concerned that you're addressing immunotherapy as a single class. Each immunotherapy is targeted to a particular mutation in NSCLC. An EGFR-mutated patient and a KRAS-mutated patient will be using different therapies, and these will work differently and for different periods of time depending on the patient, their response to the therapy, and the mutation itself. The newer the immunotherapy, the more effective it has proven to be (per a conference presentation from today). I'm not seeing a link to an article in your post. FWIW, "one in five patients" doesn't mean much in a sample size of 100 or 25. And what specific mutations do those patients who discontinue have? Something full of this many sweeping generalizations smacks of clickbait to me more than it does of science. 

[RJN]

@Lmodge - Karen is right that targeted treatments and immuno-based vaccines are muddling the picture, but for standard immunotherapies such as Pembrolizimab you are correct. In most countries outside the US, 2 years is the limit for NSCLC for immunotherapy. I believe in the US it’s a bit more mixed due to permitted off-label use. The argument is partially financial and partly that the balance between severe side effects and effectiveness after two years  is less than clear. Personally, I am finishing my immunotherapy after two years in November, and my oncologists believe that it is likely that it will keep the cancer at bay at least for a while, but I will be put on KRAS-inhibitors or chemo if there is a recurrence. 
It will be easiest for you to find your target group in one of the dedicated immuno groups on FB such as Immunotherapy Support Group. Plenty of people there fitting the profile.

[Tom Galli]

@Lmodge --  When I read your post, I considered whether to take it down. Our Forum is a safe space for lung cancer survivors and those who care for them. Obviously, we disallow all commercial enterprises advertising this and that. We also frown on people using our survivors and caregivers as survey fodder. Your post sneaked into the allowed category because you didn't link to a particular study or cite an email or contact method.

But Karen and RJN's critiques highlight my concern. Journalism today unfortunately arrives with a pre-established bias. Yours is a time certain for treating with immunotherapy. Our collective response is there is no time certain for starting or completing any specific therapy. There are guidelines and therapy decisions are best left to patients and their doctors period, full stop. We have too many on the sidelines trying to dictate what treatments we should have and for how long. We certainly don't want to give ammunition to insurance or government bureaucrats that affect OUR lives!

My disease has largely been ignored by society for almost 20 years of survivorship tenure. Now lung cancer has become a "thing" because most immunotherapy research started on lung cancer. It is the only form of therapy that is effective against all types of lung cancer (small cell, large cell, non small cell). We'd like to keep it that way.

Stay the course.

Tom