Long term use of Lenvatinib

[LindaMS]

I have endometrial cancer that metastasized to my lungs. Stage 4 and inoperable. Have been treated with immunotherapy (Pembrolizumab) for three years. So am very lucky - the initial prognosis was grim. The immunotherapy is backed by a daily dose of Lenvatinib. First it was 20mg which was brutal, then reduced to 10 and for the past two years or so just 4mg.  New side effects of treatment now occurring - mouth ulcers that won't heal and the fatigue level is much greater. Wondering if anyone else has been on this drug for a good while and how they are going.   

[Susana_CCNSW]

Dear LindaMS,

Thank you very much for joining our community.

Your story of navigating this diagnosis over the last three years is incredibly powerful, and it is so wonderful that this treatment has given you so much time despite that initial grim outlook. That being said, it sounds completely exhausting to face these tough new side effects—especially after already enduring so many dose changes. Living with chronic treatment fatigue and painful mouth ulcers takes a massive toll. I truly hope some others who have been on this specific long-term path see your post and share their experiences. In the meantime, please make sure your oncology team knows about these new symptoms so they can help you find some relief.

Best wishes

Susana

CCNSW Online Community