A Patient’s Guide to Cancer Immunotherapy
Melanoma
What You
Need to Know
Hearing the words “You have melanoma” can feel overwhelming. You may feel scared, confused, or uncertain about what comes next. These feelings are not unexpected — and you are not alone. You don’t have to become an expert overnight.
This guide from the Cancer Research Institute (CRI) is designed to help you understand a treatment option called immunotherapy, how it may fit into your melanoma treatment plan, and what questions you may want to ask your health care team along the way.
Patient’s
Perspective
Jenney Bitner
Melanoma Survivor, Stage 4
My name is Jenney Bitner, and I’m a stage 4 melanoma survivor. My cancer journey started when I was 22 weeks pregnant and suddenly became very sick. I had severe headaches, was vomiting, and even started falling — but at first, it was all attributed to pregnancy.
Eventually, a scan revealed a large tumor in my brain. Everything moved quickly after that: I had brain surgery while pregnant, and learned I had stage 4 metastatic melanoma at 24 weeks pregant. My son was born prematurely at 34 weeks. Just days after giving birth, I needed a second surgery when the tumor grew back. The cancer had also spread to other parts of my body, and doctors couldn’t find where it started.
I began immunotherapy with ipilimumab (Yervoy®) and nivolumab (Opdivo®). I remember sitting at my first infusion and crying, thinking: “I don’t belong here. I just had a baby. I have four young kids.” But after just one dose, something started to change. Tumors began to shrink, and by my fourth treatment, I felt strong enough to drive myself to my appointments. I had some serious side effects and had to stop treatment early, but when doctors scanned me again, they found no evidence of disease. Within a year of my diagnosis, I was in remission.
I didn’t think I would live to see my children grow up. Now, I get to live the life I was afraid I would miss: the everyday moments, the milestones, all of it. I know my outcome is not the same for everyone, but I share my story because I want others to know there is hope.
Getting a Diagnosis
What is
Melanoma?
What is melanoma?
Melanoma is a type of skin cancer that develops from melanocytes, the cells that produce pigment in your skin. While it is less common than other types of skin cancer, melanoma causes most skin cancer-related deaths because it is more likely to spread if not found early.
What are the different types of melanoma?
Most melanomas begin on the skin (cutaneous melanoma), but they can also develop in the eyes (uveal melanoma) or in mucosal tissues such as the mouth, nasal passages, or gastrointestinal tract (mucosal melanoma).
What does staging mean in melanoma?
Melanoma is staged from Stage 0 (in situ) to Stage IV (metastatic), based on factors such as tumor thickness, ulceration, and whether the cancer has spread to lymph nodes or other parts of your body.
What are lymph nodes, and what is a sentinel lymph node biopsy?
Lymph nodes are small structures throughout your body that are part of your immune system and help filter harmful substances, including cancer cells. In some cases, your health care team may recommend a sentinel lymph node biopsy, a procedure that checks whether melanoma has spread to nearby lymph nodes. The biopsy results can help guide staging and treatment decisions.
Making a Decision
Understanding
Immunotherapy
What is immunotherapy?
Immunotherapy is a type of cancer treatment that helps your immune system recognize and attack cancer cells. The most common type of immunotherapy used for melanoma is immune checkpoint inhibitors (ICIs). These treatments help “release the brakes” on immune cells so they can better respond to cancer.
Does immunotherapy work for everyone with melanoma?
Immunotherapy has helped many people with melanoma, but it does not work for everyone. Some melanomas respond well to immunotherapy, while others may not respond or may stop responding over time. Researchers are working to better understand why this happens.
What are biomarkers, and what does BRAF-mutation positive mean?
Testing your tumor for biomarkers or genetic mutations can provide important information to help guide treatment decisions.
Many melanomas are tested for changes (mutations) in the BRAF gene, which are found in about 40–50% of cases. If your tumor has a BRAF mutation (sometimes called “BRAF-mutation positive”), targeted therapy may be an option.
How do I get mutation or biomarker testing?
Biomarker testing is usually done on tumor tissue collected during a biopsy or surgery. You may want to ask your health care team whether your tumor has been tested and what the results mean for your treatment options.
When is immunotherapy most likely to be recommended?
Your health care team considers many factors, including cancer stage, overall health, and prior treatments before recommending a treatment plan. For many people with early-stage melanoma, surgery to remove the tumor may be the only treatment needed. For people with advanced melanoma, immunotherapy is often considered as an initial treatment, with targeted therapy used later if needed.
| Timing of Immunotherapy Treatment | |
|---|---|
| Before surgery (neoadjuvant therapy) | Immunotherapy may be used before surgery in select patients and is now included in treatment guidelines for certain situations. |
| After surgery (adjuvant therapy) | Immunotherapy may be used to help reduce the risk of melanoma returning in higher-risk cases. |
| Unresectable (e.g., meaning the tumor cannot be safely removed with surgery) or metastatic melanoma | Immunotherapy is often a standard treatment and may be used early in care. |
Which immunotherapy drugs are used for melanoma today?
Several immunotherapy options are available for melanoma. The most common are ICIs, which may be used alone or in combination depending on your treatment plan. They are often used as first-line options for advanced melanoma.
Common examples include:
Pembrolizumab (Keytruda®) is a PD-1 inhibitor used for melanoma, including advanced disease.
Nivolumab (Opdivo®) is a PD-1 inhibitor used for melanoma, alone or in combination.
Ipilimumab (Yervoy®) is a CTLA-4 inhibitor used for melanoma, often in combination with nivolumab.
Nivolumab + ipilimumab is a combination used for advanced melanoma that targets two immune pathways (PD-1 and CTLA-4).
Nivolumab + relatlimab (Opdualag™) is a combination used for advanced melanoma that targets two immune pathways (PD-1 and LAG-3).
Other immunotherapy approaches used to treat people with melanoma are tumor-infiltrating lymphocyte (TIL) therapy and oncolytic virus therapy:
Lifileucel ((Amtagvi™) is a type of cell therapy that uses your own immune cells to target cancer, typically after prior treatments.
Talimogene laherparepvec, T-VEC ((Imlygic®) is a treatment injected directly into tumors that helps destroy cancer cells and stimulate an immune response.
what to Expect
Starting
Treatment
How is immunotherapy given?
Most immunotherapies for melanoma are given through an IV (intravenous) infusion in an outpatient clinic, hospital, or cancer center. Treatment schedules can vary depending on the medication and plan but are often given every 2 to 6 weeks. Your health care team will walk you through what to expect during treatment visits.
What side effects should I expect?
Many people tolerate immunotherapy well, but side effects can occur because the immune system becomes more active and may affect healthy tissues. Common side effects may include fatigue, skin changes (such as rash or itching), and diarrhea.
Less commonly, immune-related side effects can affect organs such as the colon, liver, lungs, or other hormone-producing glands. Because melanoma usually affects the skin, it’s especially important to let your health care team know about new or worsening rashes, severe itching, and changes in existing skin lesions.
How will I know if immunotherapy treatment is working?
Your health care team will monitor how you are doing through regular follow-up visits. This may include imaging scans (such as CT, MRI, or PET scans), physical exams and skin checks, and blood tests.
Your care team will review scan results alongside lab findings and how you are feeling overall to determine whether treatment is helping.
Looking and Living Forward
Post-Treatment
Support
What ongoing care will I need?
After treatment, ongoing follow-up care is important to monitor for recurrence and manage any long-term side effects. This care may include regular skin exams, imaging tests, routine checkups, and conversations about your physical and emotional well-being.
Because people who have had melanoma may be at higher risk of developing another melanoma, regular skin exams and awareness of changes in your skin remain an important part of long-term care. Protecting your skin from UV exposure can also help reduce the risk of future skin cancers.
What if immunotherapy doesn’t work, or the melanoma comes back?
Not everyone responds to immunotherapy, and it can be difficult if treatment does not work as hoped. If treatment is not effective or the melanoma returns, your health care team may recommend a different immunotherapy approach, a targeted therapy, combination treatments, or a clinical trial.
How do I find clinical trials that may be right for me?
Clinical trials are carefully monitored research studies that test new treatments. They may offer access to promising therapies that are not yet approved by the U.S. Food and Drug Administration (FDA). You can talk with your health care team about clinical trials or use tools like CRI’s Clinical Trial Finder to explore options that may be a good fit.
Where can I find support from others with melanoma?
Connecting with others who have had melanoma can help you feel more supported. You can explore personal stories from patients and survivors treated with immunotherapy.
Organizations such as AIM at Melanoma, Melanoma Research Alliance, and Melanoma Research Foundation also offer additional educational resources, support communities, and patient and caregiver programs.
What comes next?
Melanoma treatment has changed significantly in recent years, and immunotherapy has become an important option for many people, especially those with advanced melanoma where outcomes have improved significantly over the past decade.
No matter where you are in your journey — newly diagnosed, in treatment, or considering next steps — your questions matter. Keep asking. Bring support when you can. And let your health care team know how you’re feeling, both physically and emotionally.
conversational cues
10 Questions to Ask Your Doctor
Being diagnosed with melanoma can feel overwhelming, and understanding your treatment options can make a meaningful difference. Asking questions can help you take an active role in your care, make informed decisions, and feel more prepared for conversations with your health care team.
Here are 10 questions you may want to ask your health care team.
1
What type of melanoma do I have, and what stage is it?
2
Has the melanoma spread, and if so, where?
3
Is immunotherapy a recommended option for me right now?
4
Which immunotherapy treatment(s) may be appropriate for me?
5
Should my tumor be tested for mutations such as the BRAF gene?
6
What side effects should I watch for, and when should I contact you?
7
How will we monitor whether treatment is working?
8
How often will I need scans or follow-up visits?
9
Are there clinical trials that I should consider now or in the future?
10
What support resources are available for me and my family?
Acknowledgements
We extend our sincere gratitude to the CRI ImmunoAdvocates, a group of patients treated with immunotherapy, who generously shared their experiences, insights, and time to help shape this guide. By telling your stories and offering your perspectives, you’ve helped ensure that people newly diagnosed with cancer feel seen, supported, and empowered as they begin their immunotherapy journey.
Disclaimer: This information is intended for educational purposes only and is not a substitute for professional medical advice, diagnosis, or treatment. Always talk with your health care team about questions or decisions related to your care.