Have any of you experienced severe vision issues from treatment? My husband has been on FOLFOX, Keytruda & Ogivri...

I'm so sorry you're dealing with this worry alongside your husband's cancer treatment. Vision changes during or after cancer treatment are understandably frightening, and I'm glad you got him to an ophthalmologist quickly.

Before I address what might be happening, I want to be clear: I can help you understand the medical context, but his ophthalmologist's findings and your oncology team's assessment are what matter most here. This needs urgent coordination between his eye doctor and cancer care team.

Understanding Vision Issues in This Context

Your husband is on a significant treatment regimen (FOLFOX chemotherapy + Keytruda immunotherapy + Ogivri/trastuzumab). Vision changes can arise from several sources:

Treatment-Related Causes:

• Chemotherapy effects: FOLFOX can rarely cause ocular toxicity, though vision loss is uncommon
• Immunotherapy effects: Keytruda can trigger immune-related adverse events (irAEs) affecting various tissues, including rarely the eye/optic nerve
• Trastuzumab: Generally well-tolerated ophthalmologically, but individual responses vary

Other Possibilities:

• Infection or inflammation (opportunistic or otherwise)
• Vascular events (blood clots or bleeding)
• Metastatic disease to the eye or brain (which his ophthalmologist is appropriately considering)
• Unrelated eye conditions that coincidentally developed

What Needs to Happen Now

According to ASCO Guidelines on managing immunotherapy side effects, any new neurological or sensory symptoms require urgent evaluation and coordination between oncology and the relevant specialist. This is especially true for vision loss.

Critical next steps:

1. Immediate oncology notification - His cancer team needs to know TODAY if they don't already
2. Imaging coordination - The ophthalmologist's concern about tumor involvement may warrant MRI of the brain/orbits
3. Specialist communication - Ensure ophthalmology and oncology are directly communicating

Questions for His Medical Team

When you contact his oncologist, ask:

1. "Given his current treatment regimen, what are the most likely causes of acute vision loss we should investigate?"
2. "Does this require imaging (MRI/CT) to rule out metastatic disease or treatment-related complications?"
3. "Should we pause any treatments pending investigation, or continue as scheduled?"
4. "Is this consistent with an immune-related adverse event from Keytruda, and if so, what's the management approach?"
5. "Who will be coordinating between ophthalmology and oncology on this?"

Important Context

According to the National Comprehensive Cancer Network (NCCN) Guidelines on immunotherapy management, new or worsening symptoms during treatment—especially sensory changes—should be treated as potentially serious and warrant prompt investigation. Vision loss is not a typical expected side effect, which makes rapid evaluation essential.

The good news: His ophthalmologist is taking this seriously and considering the right differential diagnoses. The fact that imaging/investigation is being considered is appropriate.

This information is for educational purposes only. Always consult your healthcare team for personalized medical advice and decisions.

I hope you get answers quickly. This must be incredibly stressful. Please don't hesitate to advocate for urgent coordination between his doctors. 💙