Starting Immunotherapy for Stage 4 Metastatic Melanoma

Hi Alex,
It’s wonderful to hear you have a strong support system and a solid spiritual foundation to navigate this journey....cancer diagnosis can bring a unique perspective, helping us cherish life’s moments and lean into faith and community. Your optimism and strength are truly inspiring, and I’m here to provide some specific information about your immunotherapy, which we’ll assume is Keytruda (pembrolizumab) for now, to help you discuss side effects and outcomes with your oncologist. Please let us know if it is a different immunotherapy.

About Keytruda (Pembrolizumab)
Keytruda is an immune checkpoint inhibitor, a type of immunotherapy that blocks the PD-1 protein, allowing your immune system to better attack cancer cells. It’s approved for various cancers, including melanoma, and other cancers. If you’re on Keytruda, you’re likely receiving it via IV infusion every 3 or 6 weeks, depending on your treatment plan.

Common Side Effects
Keytruda is generally well-tolerated, but because it ramps up your immune system, it can cause immune-related side effects (irAEs) by affecting healthy tissues. Based on clinical data, here are the most common side effects and what to watch for:
Fatigue (up to 47% of patients):
What to Expect: Feeling tired or low-energy, which may vary in intensity.
Management: Rest, maintain light activity (like short walks, if approved by your doctor), and report persistent fatigue to your team.
Skin Reactions (up to 20%):
What to Expect: Rash, itching, or vitiligo (skin depigmentation).
Management: Use gentle skincare products, avoid sun exposure, and notify your doctor if severe (e.g., blistering).
Thyroid Dysfunction (up to 15%, as discussed previously):
Hypothyroidism (8%): Tiredness, weight gain, feeling cold.
Hyperthyroidism (3.4%): Weight loss, rapid heart rate, anxiety.
What to Expect: Often starts within 6–12 weeks. May be transient (hyperthyroidism turning to hypothyroidism).
Management: Regular thyroid function tests (TSH, T4). Levothyroxine for hypothyroidism or beta-blockers/antithyroid drugs for hyperthyroidism. Rarely requires stopping Keytruda.
Gastrointestinal Issues (10–20%):
What to Expect: Diarrhea, nausea, or, less commonly, colitis (severe diarrhea, abdominal pain).
Management: Stay hydrated, report persistent diarrhea (≥7 stools/day), and seek urgent care for colitis symptoms. Corticosteroids may be used for severe cases.
Other Immune-Related Effects (less common, 1–5%):
Lung Inflammation (Pneumonitis): Cough, shortness of breath.
Liver Inflammation (Hepatitis): Yellowing skin, dark urine.
Kidney Issues (Nephritis): Changes in urine output.
Management: Early reporting is critical, as these may require corticosteroids or pausing Keytruda.
Rare but Serious: Severe immune reactions (e.g., myocarditis, neurological issues) occur in < 1% but require immediate attention. Always report new or worsening symptoms (e.g., chest pain, confusion) to your oncologist.

Outcomes
Keytruda has been a game-changer for many cancers, often improving survival rates and quality of life compared to traditional therapies. Outcomes depend on your cancer type, stage, and overall health, but here are some general insights:
Response Rates: In trials, 15–50% of patients (depending on cancer type) show tumor shrinkage or stabilization. For example, in advanced melanoma, ~40% of patients respond, with some achieving long-term remission.
Survival: Keytruda can extend progression-free survival (PFS) and overall survival (OS). For instance, in non-small cell lung cancer, 5-year survival rates with Keytruda are much higher than earlier treatments
Prognostic Note: Interestingly, developing immune-related side effects (like thyroid issues) is sometimes linked to better cancer outcomes, possibly reflecting a strong immune response So that could be a good thing
Questions for Your Oncologist
To make the most of your treatment, consider asking:
What side effects are most likely for my cancer and treatment plan (e.g., Keytruda alone or with chemo)?
How often will my thyroid and other organ functions be monitored?
Are there signs I should report immediately (e.g., severe diarrhea, breathing issues)? When should I go directly to the ER
Based on my cancer type/stage, what response rates or survival outcomes are typical?
Are there lifestyle changes (e.g., diet, exercise) that could support my treatment?
Final Thoughts
Alex, your spiritual strength and support system are powerful assets, a cancer diagnosis can sharpen our appreciation for life’s beauty. Keytruda offers hope for many, and while side effects are possible, most are manageable with close monitoring. If you are on another immunotherapy (Opdivo,Tecentriq) let us know and we can provide more information

Be sure to lean on your oncologist!
Feel free to reach out with more details or questions. Wishing you strength and healing on this journey

Hi Roy, thank you for all the insights. This is what I pulled from the oncology recap:
“We will use nivolumab plus relatlimab as the preferred regimen”. Thanks Alex

@amonasterio, you're in good hands at Mayo Clinic. Your attitude will also serve your well. I'm tagging fellow members @grammato3 @williamfh @beebe @mlenney167, who also have experience with immunotherapy for stage 4 melanoma.

Amonasterio, have you started treatment? How are you doing?

@amonasterio I hear you; it's overwhelming to hear the diagnosis as the mind and body go into overdrive trying to cope with the news. Our first reaction is frequently as you alluded to, "this is a death sentence" but as we learned, with the advances that have been made with treatment, this is thankfully in many cases a false assumption.

Surrounding yourself with loved ones is very important as it getting your body into optimal shape - not just physically but nutritionally. Did you know that as part of the services offered at Mayo, you can have a consult with a nurtitionist? You could request one via your patient portal or when you see your oncologist.

It's natural to wonder about side effects of immunotherapy, and while percentages can be applied as to how frequently they occur, it helps to bear in mind individuals react differently to the various types of therapeutic interventions. Some people have even been known to breeze through treatment without reporting any adverse reactions aside from perhaps some fatigue! Personally, like you, I found it helped to be aware of what I could potentially expect so if/when I started to experience any of the symptoms I could immediately report them to my provider and get the necessary intervention as promptly as possible. This has helped me tremendously.

A guide I found so helpful I printed it out for quick and easy reference was put out by AIM with Immunotherapy Foundation. Specifically for the type of therapy you're receiving, you can find the information here: https://aimwithimmunotherapy.org/wp-content/uploads/2024/12/IO-Opdualag-PAP-2024.pdf

Let me know it this helps and wishing you this best!

I too have stage 4 melanoma diagnosed 6 weeks ago. Had my 1st immunotherapy 2 weeks ago. Don't exactly know the 2 different drugs they're using but pretty debilitating. Very fatigued, no appetite, nauseous but not vomiting. Cancer was found in my right lung, neck, liver, adrenal glands and duodenal. Not in any pain to speak of just extremely weak. Any advice on how to handle this would be greatly appreciated.

Thanks
Robert