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Starting Immunotherapy for Stage 4 Metastatic Melanoma
Shocker! Someone told me how I might die and told me I have incurable cancer..I don’t believe that.
My journey started in a different state and hospital. They said I had squamous cell carcinoma, but it turns out after the pathologist here at Mayo look at the slides. It was melanoma. I came to Mayo because I needed some hearing aids at age 55. And the ENT said you have a tumor on your neck and I thought it was the scar tissue from the squamous which was really melanoma. And after various visits to the hospital for testing, they told me I have stage four cancer. Nothing‘s really changed in my mind from before I was diagnosed to the day after. We all gotta die soon sooner or later. And honestly, I know where I’m going.. I started a fast and have been praying for about 17 days just water and I feel great. I went to the beach today with my kids played football and enjoyed the day and I have more energy and I’ve lost a lot of weight. I feel like I’m at fighting weight right now. And frankly that’s my goal. I’m looking at this as a 12 round fight against Mike Tyson and I’m getting down to fighting weight. I’m building up community praying and pressing into God‘s Word. Honestly, I feel anything is possible. My body can generate millions of white blood cells and T cells and stem cells and can attack this “bad actor”. My body can cooperate with immunotherapy and so on. I guess I’m optimistic and new to this. And I have four kids and a wife, And so I will fight harder than I’ve ever fought anything before. I guess my question is what to expect with immunotherapy? What kind of side effects can I expect? My oncologist said there was some pretty high risk percentages in the neighborhood of 20% to other organs and such. Feels kinda high to me. I have a lot of confidence and strength, life and faith and I have no fear to be honest… I know how serious this is… Thanks for any feedback you can provide. Alex.
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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