Side effects may be in fine print,
but they're not minor details.

Your side effects matter.

For many cancer patients, the side effects of new generation cancer treatments aren’t just fine print on a page – they are an everyday struggle, and one worth addressing.

To start, let’s take a closer look at the nature of these side effects.

You May Hear Them Called …

Side effects for these types of drugs are related to the immune system, so you may hear them referred to as immune-related side effects, autoimmune side effects, or immune-related adverse events (irAEs). Here, we’ll refer to them in the shorthand, “side effects.” 

They’re Not Always Temporary

Though we often think about side effects as temporary discomforts that will go away once you’re done taking the drug, that’s not always the case with cancer treatments – including these new drugs. You may experience side effects for months or years after treatment; there’s also a chance you may live with them for the rest of your life. 

They’re Unpredictable

One of the reasons these side effects can be difficult to deal with (for both patients and doctors), is that they’re highly unpredictable. 

We have a good idea what to expect with old school cancer treatments like chemotherapy and radiation; we created them to kill cancer cells in a specific way, so we can somewhat predict how they might impact healthy cells that are caught in the crossfire. But the new generation treatments weren’t created to kill cancer directly – they were created to activate the immune system, which is essentially like hiring a highly effective, but not entirely controllable, hit man.

This explains why patients’ experiences are so varied and why managing these side effects requires a trial-and-error approach: What works for one patient may not be effective for another. 

They Look Similar to Symptoms of Autoimmune Conditions

Autoimmune conditions (e.g., rheumatoid arthritis, lupus) are caused by an uncontrolled immune system that is mistakenly attacking healthy cells. The new cancer treatments essentially create a temporary uncontrolled immune system in order to attack cancer cells. Like with autoimmune conditions, healthy cells are attacked by the immune system. This is why the side effects that result from these cancer treatments look a lot like the symptoms of the autoimmune conditions.

There Are Specialists Who May Be Able to Help

Autoimmune conditions are treated by doctors who specialize in the affected area of the body – cardiologists, endocrinologists, rheumatologists, and others. They work closely with their patients to understand the patient’s symptoms and to find the right treatments. Because the new cancer treatment side effects operate similarly to autoimmune conditions, there’s a good chance that a specialist(s) may be able to shed light on your side effects and help find a way forward.

We’re All Still Learning

“New generation” means that these cancer treatments operate differently, and impact our bodies differently, than the treatments before them. So there’s a lot that we’re all still figuring out – including the most effective ways to minimize and manage side effects. This is why it’s important for cancer patients to ask questions and advocate for themselves.

Communication Is the Key

Your cancer team can only respond to the information you give them. If you’re experiencing side effects of any kind – even if you’re not sure what you’re feeling is from the treatment – it’s important to share with your care team as soon as possible. You may need to be bolder and more persistent in advocating for yourself than perhaps are comfortable with (or have the energy for). Again, it’s helpful to remember that we’re all still learning – your care team is, too. 

Advocating for yourself starts with informing yourself. Each of the new cancer treatments affects your immune system differently, so to learn more about what you’re experiencing and how to find help, follow the relevant path below.