For basal cell carcinoma has anyone had to use vismodegib?

@oriole - Facing a diagnosis of basal cell carcinoma (BCC) near your eye, with possible orbital involvement and eye misalignment, is understandably overwhelming. The plan to take vismodegib (Erivedge) for two months to shrink the tumor before potential surgery is a proactive step, and you’re seeking clarity on its effectiveness and what to expect.
Your BCC, initially set for Mohs surgery, was found to extend near your eye socket, causing misalignment and raising concerns about deeper involvement. Vismodegib, a Hedgehog pathway inhibitor, is designed for locally advanced BCC like yours, where surgery alone risks vision or appearance. It’s encouraging that your doctors chose this neoadjuvant approach to reduce tumor size, potentially making surgery less invasive and preserving your eye.
Studies show vismodegib’s effectiveness for periocular/orbital BCC. The VISORB trial (2021) reported that 56% of patients achieved complete tumor regression, with 67% showing no residual disease after surgery. Another case series found 48% complete and 48% partial responses in orbital BCC, often avoiding disfiguring procedures. For example, a 79-year-old man with medial orbital BCC saw near-total tumor shrinkage, enabling simpler surgery with clear margins. A 50-year-old with periocular BCC had similar success, with vismodegib reducing the tumor for targeted excision. These outcomes suggest vismodegib could shrink your tumor, improving surgical outcomes and possibly addressing eye misalignment by relieving tumor pressure.
Side effects are a valid concern. Common issues include muscle spasms (69–76%), altered taste (46–57%), hair loss (46%), and fatigue (61%). These are often mild, and your two-month course may limit their severity compared to longer treatments (4–12 months). Severe side effects, like hepatotoxicity (10%), are rare, but monitoring is key. Strategies like hydration, magnesium for cramps, or brief dose breaks can help, as seen in patients who tolerated treatment well. Discuss these with your doctor to feel prepared.
Your eye misalignment, possibly from tumor pressure or invasion, may improve with tumor shrinkage, as seen in cases with eyelid issues. However, residual scarring might require reconstructive surgery, like flap techniques, to restore alignment and aesthetics. The planned surgery post-vismodegib aims to clear any remaining cells, reducing recurrence risk (0–31% in studies). Regular follow-ups, including MRI or clinical exams, will track progress, ensuring the best outcome.
You’re showing strength by seeking information and facing this challenge. To stay empowered, consider small steps: ask your doctor about side effect management, track symptoms in a journal, or seek support from a counselor or loved ones. Vismodegib has helped many preserve vision and avoid extensive surgery, and your short-term treatment aligns with successful cases. Monitor for new skin lesions, as some patients (29%) developed unrelated squamous cell carcinomas, and report any severe symptoms promptly.
You’re not alone in this. Your care team is guiding you toward a tailored plan, and your proactive approach is a powerful foundation. Keep asking questions, and take pride in each step toward recovery.

@oriole - Facing a diagnosis of basal cell carcinoma (BCC) near your eye, with possible orbital involvement and eye misalignment, is understandably overwhelming. The plan to take vismodegib (Erivedge) for two months to shrink the tumor before potential surgery is a proactive step, and you’re seeking clarity on its effectiveness and what to expect.
Your BCC, initially set for Mohs surgery, was found to extend near your eye socket, causing misalignment and raising concerns about deeper involvement. Vismodegib, a Hedgehog pathway inhibitor, is designed for locally advanced BCC like yours, where surgery alone risks vision or appearance. It’s encouraging that your doctors chose this neoadjuvant approach to reduce tumor size, potentially making surgery less invasive and preserving your eye.
Studies show vismodegib’s effectiveness for periocular/orbital BCC. The VISORB trial (2021) reported that 56% of patients achieved complete tumor regression, with 67% showing no residual disease after surgery. Another case series found 48% complete and 48% partial responses in orbital BCC, often avoiding disfiguring procedures. For example, a 79-year-old man with medial orbital BCC saw near-total tumor shrinkage, enabling simpler surgery with clear margins. A 50-year-old with periocular BCC had similar success, with vismodegib reducing the tumor for targeted excision. These outcomes suggest vismodegib could shrink your tumor, improving surgical outcomes and possibly addressing eye misalignment by relieving tumor pressure.
Side effects are a valid concern. Common issues include muscle spasms (69–76%), altered taste (46–57%), hair loss (46%), and fatigue (61%). These are often mild, and your two-month course may limit their severity compared to longer treatments (4–12 months). Severe side effects, like hepatotoxicity (10%), are rare, but monitoring is key. Strategies like hydration, magnesium for cramps, or brief dose breaks can help, as seen in patients who tolerated treatment well. Discuss these with your doctor to feel prepared.
Your eye misalignment, possibly from tumor pressure or invasion, may improve with tumor shrinkage, as seen in cases with eyelid issues. However, residual scarring might require reconstructive surgery, like flap techniques, to restore alignment and aesthetics. The planned surgery post-vismodegib aims to clear any remaining cells, reducing recurrence risk (0–31% in studies). Regular follow-ups, including MRI or clinical exams, will track progress, ensuring the best outcome.
You’re showing strength by seeking information and facing this challenge. To stay empowered, consider small steps: ask your doctor about side effect management, track symptoms in a journal, or seek support from a counselor or loved ones. Vismodegib has helped many preserve vision and avoid extensive surgery, and your short-term treatment aligns with successful cases. Monitor for new skin lesions, as some patients (29%) developed unrelated squamous cell carcinomas, and report any severe symptoms promptly.
You’re not alone in this. Your care team is guiding you toward a tailored plan, and your proactive approach is a powerful foundation. Keep asking questions, and take pride in each step toward recovery.

@gingerw - That's actually a great question! Vismodegib, a Hedgehog pathway inhibitor, is approved for advanced basal cell carcinoma, not squamous cell carcinoma (SCC). Some case reports even suggest SCC may develop during or after vismodegib use for BCC, possibly due to transformation of the cells. Standard SCC treatments include immunotherapy (e.g., cemiplimab), chemotherapy, surgery, or radiation. Of course these would be great topics to discuss with your dermatologist.

@gingerw - There could be several reasons why your doctor is not recommending a pharmaceutical or biological for treatment of your SCC. They may lack familiarity or experience or it is possible that your case is not a good fit for these regimens. Would you feel comfortable in asking your doctor why they are not recommending these alternatives? Have you thought about seeking a second opinion about alternative approaches?

Standard treatments for squamous cell carcinoma (SCC), particularly cutaneous SCC (cSCC), depend on stage and patient factors. For localized SCC, surgery (excision or Mohs surgery) is common, while radiation suits non-surgical cases or high-risk tumors. Immunotherapy, like cemiplimab, a PD-1 inhibitor, is used for advanced or metastatic cSCC when surgery or radiation isn’t viable. Cemiplimab, administered intravenously every 3 weeks, blocks PD-1 to boost immune response, achieving ~47% response rates in trials (e.g., EMPOWER-CSCC-1) with durable outcomes. Side effects include fatigue, rash, and immune-related issues (e.g., pneumonitis). Pembrolizumab, another PD-1 inhibitor, offers similar benefits. Chemotherapy (e.g., cisplatin, 5-fluorouracil (5FU)) is less common, used for metastatic cases or post-immunotherapy failure, often with radiation for palliative care. It's interesting to note that when I was undergoing chemo for colon cancer a common drug is Capecitibine which is a prodrug of 5FU ie, once in the body it breaks down into three forms of 5FU. Well I have been dealing with many precancerous lesions on my face around my eyes and during the chemo with Capecitibine, all of these even those that were not visible lit up! And eventually healed into smooth normal skin. This was such a surprising instance that dermatologist at Mayo use this is a case study for training in medical school. So sometimes drugs work and unexpected ways

Targeted therapies, like EGFR inhibitors (e.g., cetuximab), address specific SCC profiles, typically in advanced head and neck cases. For superficial SCC, cryotherapy or topical treatments (e.g., 5-fluorouracil, imiquimod) are effective. Cemiplimab is ideal for unresectable tumors or immunocompromised patients but requires monitoring for toxicities. Emerging trials explore combination therapies. For deeper details on cemiplimab or recent advances, let me know! Your determined approach will pay dividends!

@roywalton I have had many SCC situations, and the only option I have been offered is surgery. I'm not sure, to tell you the truth, why additional treatment options have not been offered. Thank you so much for your information! I figure that I have earned every scar, wrinkle, and gray hair LOL
Ginger