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Ankle swelling with pain while on Everolimus for PNET

Posted by marni999 @marni999, Jul 30 10:27pm

Started Everolimus for pancreatic Neuroendocrine cancer with Mets to liver and bone diagnosed four years ago. Was 49 when diagnosed. Had TACEx4, IV radiation(PRRT) x4, removal of pancreas tail primary tumor last year along with spleen and gallbladder, immunotherapy for a year and half( stopped due to disease progression) , and have been on lanreotide injections every 4weeks since diagnoses, and started Everolimus 10mg daily 2 months ago( had to stop for oral surgery for 3weeks) as I developed an abscess in tooth. This occurred suspiciously right after starting med along with painful mouth sores, acne, and rashes. Now have swollen left ankle with pain and redness. X-ray and ultrasound done. Now due for MRI and ortho surgeon consult in two weeks. Has anyone else had this side effect? I did not injure ankle. This came on upon restarting Everolimus.

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jlsgt | @jlsgt | Jul 31 1:37pm

Hey Marni, I'm so sorry you are having these challenges. I too am a NETs patient. Everolimus has been reported to cause the very issues you are struggling with. As I understand it, Everolimus affects cell growth and metabolism which can lead to fluid retention such as your ankle swelling. It might be that a change in dosage could help with that problem? Have you discussed this with your doctor?

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marni999 | @marni999 | Jul 31 10:01pm

Thank you for responding. Yes, my doc has me on a two week med holiday and then reduce dosage to 5mg a day. Already my energy levels are improved and skin cleared up, but it’s been a week off med and no improvement in ankle. Actually I have a new swollen spot on my foot. I’ve got myself all worried that it’s a new met to the bone in foot as I’ve read this upon researching it a little. I should know better than to Dr. Google at this point.😹 While I’m awaiting MRI and ortho consult I need to stick to asking people who are going through same disease. Thanks again and I hope you are having a peaceful evening.🤗🌺

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Turkey, Volunteer Mentor | @tomrennie | Aug 7 7:08am
In reply to @marni999 "Thank you for responding. Yes, my doc has me on a two week med holiday and..." + (show)
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Thank you for responding. Yes, my doc has me on a two week med holiday and then reduce dosage to 5mg a day. Already my energy levels are improved and skin cleared up, but it’s been a week off med and no improvement in ankle. Actually I have a new swollen spot on my foot. I’ve got myself all worried that it’s a new met to the bone in foot as I’ve read this upon researching it a little. I should know better than to Dr. Google at this point.😹 While I’m awaiting MRI and ortho consult I need to stick to asking people who are going through same disease. Thanks again and I hope you are having a peaceful evening.🤗🌺

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How is the foot doing? Any change?

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