Your treatment hasn't been the easy, breezy experience they show in the commercials. (You definitely don't feel like flying a kite right now.)

You're not the only one struggling.

Though many patients have an easy time with immune checkpoint inhibitor treatment, that’s not the case for everyone. If you’re among those experiencing side effects, know that you’re not alone, your experience is as valid as that of the smiling people in the commercials, and your side effects are worth taking seriously.

And there are specialists who may be able to help you.

The Connection to Other Specialties

Immune checkpoint inhibitors (ICIs) work by taking the reins off your immune system and fully activating your immune response to attack cancer cells. The downside is that it may mistakenly go after healthy organs and tissues in other parts of your body, as well. That’s where side effects come from.

Many of the side effects of ICI cancer treatment closely resemble the types of symptoms that we see in autoimmune conditions.

Autoimmune conditions (e.g., rheumatoid arthritis, lupus) occur when the immune system fails to distinguish between foreign invaders and the body’s own cells, launching an attack against healthy tissue – similar to the “mistaken identity” issue we just talked about with ICI cancer treatments. Because there’s a similar process at play, the resulting side effects look similar, as well. 

Let’s look at the similarities between side effects and autoimmune symptoms.

If you are experiencing one of these ICI side effects, it does not mean that you have the condition in the righthand column – but it does offer a clue to possible treatment options for your side effects. 

Doctors have found that, in many cases, drugs that ease the symptoms of autoimmune conditions often ease the side effects of the temporary “autoimmune” state created by your cancer treatment. 

To explore the possibility that drugs used for autoimmune conditions might help your side effects, you’ll need to see a specialist who treats the autoimmune condition(s) that correlate to your side effects.

Rheumatologists, gastroenterologists, endocrinologists, dermatologists, pulmonologists, and neurologists each have deep expertise in the kinds of organ inflammation that ICI side effects can cause. Involving the appropriate specialists, who know autoimmune treatments inside and out, can mean the difference between side effects being livable or life-altering.

Next Step: Talking to Your Cancer Team

Every patient’s relationship with their cancer team is different – some patients feel completely at ease asking to see a specialist; others feel anxious and unsure how to go about it. Below are some thoughts to keep in mind, as well as some tips for the conversation with your oncologist. 

We are all still learning. Many oncologists are not yet aware of the connection between cancer care and autoimmune condition care, which isn’t a failure on their part; this is relatively new information in a rapidly advancing field, and it simply may not have reached them yet. In cases like this, patients may be ones bringing helpful information to the table. We’ve prepared a printable document with information and links that may help. 

It’s normal to feel anxious. Approaching your cancer team with information you found on the internet can be anxiety-inducing: What if they think I’m questioning their ability? What if they don’t listen to me? But when you’re undergoing cancer treatment, you can’t afford to let this discomfort stop you from speaking up. To ease anxiety, consider bringing a support person with you to the conversation and come prepared with information to share (see above bullet).

The squeaky wheel … If your doctor doesn’t initially respond as you had hoped, do not be dissuaded. Talk to every person on your cancer team, and keep talking, until you get connected with a specialist. Advocating for yourself in this way may be far outside your comfort zone, and fatigue and pain may make it difficult to find the energy, but you are worth the effort. For extra support, ask friends or family to help in your advocacy; online patient advocacy organizations may be of help, as well. 

Clear requests get the best results. Be prepared with clear information, questions, and requests for your doctor – and take notes during the conversation. Here are some suggestions:

• Name the specific symptom and the specific autoimmune condition it resembles. Be direct: “My joint pain and swelling look a lot like rheumatoid arthritis. Can we bring in a rheumatologist who has experience treating patients on immunotherapy?” Specificity helps your team act faster.
• Ask about multidisciplinary clinics that handle this type of thing. Many major cancer centers have dedicated irAE clinics (irAEs is another term for the side effects from immunotherapies). These centers involve specialists from different disciplines (rheumatologists, gastroenterologists, etc.). Ask if this is available to you.
• Request a formal referral, not just advice. Ask your oncologist to make a formal referral — not just an informal suggestion. A referral ensures the specialist receives your medical records, understands your ICI treatment context, and can follow up consistently.
• Ask about communication between your providers. “How will you and the specialist communicate about my care plan?” Ensuring your cancer team and any new specialists are in direct contact prevents conflicting advice and treatment gaps.

Preparing to See a Specialist

Before you see the specialist to discuss your side effects, it may be helpful to have some context about autoimmune conditions and how they’re treated. 

Specialists and Patients Work Together. The nature of autoimmune conditions necessitates a close, cooperative relationship between physician and patient. Because autoimmune conditions usually can’t be definitively diagnosed with a test or scan, physicians have to rely heavily on patients to give them the information they need to make a diagnosis. In these specialties, physicians are accustomed to working hand-in-hand with their patients to solve problems, so be prepared to play an active role in your care.

Management Requires Trial-And-Error. Because our immune system is individualized, a treatment plan that works for one patient may not work for another. So, be prepared for some trial-and-error. Again, good communication will be essential for finding a treatment plan that is best for you.

The Better the Information, the Better the Care. The specialist will be making treatment decisions based on the information you provide, so keep a symptom log and bring it to every appointment. Document when symptoms appeared, how they have progressed, their severity on a 1–10 scale, and any patterns (time of day, activity level, foods). 

What You Can Do for Yourself Right Now

Because ICI side effects look a lot like autoimmune condition symptoms, lifestyle tweaks that help people living with autoimmune conditions may help you, as well. 

These evidence-informed lifestyle strategies may help reduce inflammation, manage fatigue, and improve quality of life. Always discuss any new regimen with your care team before starting.

• Anti-Inflammatory Diet: Emphasize whole foods, leafy greens, oily fish (omega-3s), olive oil, and berries. Limit processed foods, refined sugars, and red meat. A Mediterranean-style diet is well-studied for reducing systemic inflammation.
• Hydration: Adequate fluid intake supports kidney function — particularly important when nephritis or colitis is a concern. Herbal teas and broth-based soups can supplement water intake.
• Gentle, Consistent Movement: Low-impact exercise (walking, swimming, yoga, tai chi) reduces inflammatory markers and combats fatigue without stressing inflamed joints. Even 10–15 minutes daily can be beneficial.
• Sleep Hygiene: Autoimmune flares and irAEs are often worsened by poor sleep. Consistent sleep schedules, cool room temperatures, and limiting screens before bed support immune regulation and recovery.
• Stress Reduction: Chronic stress elevates cortisol and pro-inflammatory cytokines. Mindfulness meditation, deep breathing exercises, journaling, and therapy (especially cognitive-behavioral therapy) are used widely in autoimmune care.
• Sun Protection: ICI-related skin sensitivity can make sun exposure more damaging. SPF 50+, protective clothing, and avoiding peak sun hours are recommended — mirroring guidance for lupus patients.
• Alcohol Moderation: Alcohol can worsen liver inflammation (particularly relevant with hepatitis risk) and interact with corticosteroid therapy. Guidelines typically recommend limiting or eliminating intake.
• Peer Support: Connecting with others — through cancer support groups or autoimmune disease communities — provides practical tips, emotional validation, and has been shown to improve psychological outcomes and treatment adherence.
• Pacing & Energy Management: Occupational therapists who work with autoimmune patients teach “pacing” — distributing activities throughout the day, building in rest, and avoiding the push-crash cycle common in fatigue-related conditions.