I’m back in Orlando this month and wrapping up my final stretch in West Virginia, with just one more week of locums work there before I officially close that chapter. It’s been a rewarding journey, but I’m excited to be home again. In the meantime, I’ve also started working a couple of days each week with Florida Cancer Specialists here in downtown Orlando, which has been a wonderful experience — the clinic staff, nurses, and physicians have been fantastic, and I’ve really enjoyed caring for patients in this setting. Looking ahead, I’m preparing to begin at AdventHealth Cancer Institute on December 1st. I feel fortunate to have these opportunities and grateful for the balance they’ve brought, both professionally and personally.
Caring for a loved one on cancer treatment is never easy. For families and caregivers supporting patients on immunotherapy, the journey often comes with unique challenges — some visible, others subtle. In clinic, I see these struggles every day, and I want to share a few reflections on what makes this path difficult and how caregivers can find their footing.
Recognizing Side Effects: Subtle Clues, Big Impact
One of the hardest parts of caregiving during immunotherapy is learning to spot changes from a patient’s baseline. Fatigue, skin rashes, mild diarrhea, or cough may sound minor at first, but they can sometimes signal immune-related side effects (irAEs) that need medical attention.
The tricky part? Immunotherapy side effects don’t always appear right away, and they can affect almost any organ system. The more common ones include:
- Fatigue – often persistent and hard to separate from the cancer itself.
- Skin changes – rash or itching.
- GI issues – diarrhea or abdominal pain.
- Pulmonary symptoms – cough or shortness of breath.
- Endocrine changes – thyroid, pituitary, or adrenal dysfunction, sometimes subtle at first.
Less common but very serious side effects can include myocarditis (inflammation of the heart), neurologic syndromes, or severe hepatitis. These are rare, but they remind us why even “small” symptoms matter.
For caregivers, this means keeping a close eye on daily changes. You know your loved one’s baseline better than anyone — so if you notice something new, persistent, or worsening, it’s always worth speaking up.
Communication Is Everything
Another major challenge is figuring out when and how to communicate concerns. Many caregivers feel torn between not wanting to “bother” the oncology team and worrying about missing something important.
Here’s what I recommend:
- Use your clinic’s communication system — whether that’s a patient portal, phone call, or dedicated nurse navigator.
- Escalate if needed — if you don’t hear back within 4–6 hours about a concerning issue, follow up. If symptoms are severe or worsening, don’t wait — go to the ER or call 911.
- Keep key numbers handy — your oncology clinic, nurse navigator, and (if on oral therapy) oncology pharmacist.
The healthcare system can feel overwhelming, and sometimes messages get delayed simply because clinics are busy. Don’t interpret that as being ignored. Stay persistent and clear about what you’re seeing.
Supporting the Patient — and Yourself
Caregiving is a full-time job layered on top of everything else in life. Transportation to appointments, managing medications, and coordinating schedules can feel all-consuming. And yet, caregivers often forget one essential truth: you cannot pour from an empty cup.
Some ways to build balance:
- Pair treatments with small rituals — breakfast after labs, a short walk before infusion, or even treating the appointment day as a “mini outing.”
- Share the load — don’t hesitate to ask friends or family to help with transportation, meals, or simply sitting with the patient. People are often eager to help but don’t know how unless asked.
- Protect your own well-being — carve out time for your own health appointments, rest, and emotional reset. Mental, physical, and spiritual health all matter here.
Remember: cancer affects the whole family, not just the patient. Self-care isn’t selfish — it’s essential to sustain the caregiving journey.
The Bottom Line
Caregivers are the first line of defense when it comes to spotting changes and advocating for timely care. Your voice matters — both in observing symptoms and in keeping communication open with the oncology team. At the same time, tending to your own well-being ensures you have the strength to continue offering support.
If there’s one takeaway, it’s this: trust what you notice, speak up early, and don’t forget to care for yourself along the way.
About the author
Dr. Sajeve Thomas is a distinguished medical professional and a compassionate guide in the field of oncology. With over a decade of dedicated experience as a board-certified medical oncologist/internal medicine specialist, Dr. Thomas has become a trusted expert in the treatment of melanoma, sarcoma, and gastrointestinal conditions. He brings a wealth of expertise to the complex and challenging world of oncology.
Disclosures:
Dr. Thomas serves as a speaker for Bristol Myers Squibb (BMS), Merck, Ipsen, Natera, Immunocore, Pfizer, and SpringWorks. He also receives industry grants in support of numerous clinical trials.