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Thu, Jun 18 5:31pm · Affinitor - Pneumonitis in Neuroendocrine Tumors (NETs)

Hi, thank you! We did meet with the NET specialist. Still wants to give my mom an opportunity for her lungs to heal and then likely start lanreotide. We continue to pray🙏.

Fri, May 29 9:43am · Affinitor - Pneumonitis in Neuroendocrine Tumors (NETs)

Thank you so much! The appointment is on June 12th. Looking forward to it! I will circle back. Thanks!

Fri, May 22 10:26pm · Affinitor - Pneumonitis in Neuroendocrine Tumors (NETs)

Thanks! @hopeful33250 those articles are helpful! I’m a caregiver. My mom was diagnosed with NETs (Primary in lung) in May 2018. She was on Occtreotide from June 2018 to Nov 2019. Based on her scans with mild increase of cancer activity, the oncologist (traditional thoracic lung oncologist) thought Affinitor would be the next option of treatment so we started in December 2019. In February 2020 my mom developed a new dry cough. In March she developed a little shortness of breath and weight loss. We brought this to the pcp and oncologist attention and I specifically asked the oncology team if her medication could be the cause of the cough and shortness of breath and was told it was not likely. Fast forward to April 3, 2020, new PET scan revealed pleural effusions on the lungs so it was deemed pneumonia. She was treated with two rounds of antibiotics and steroids, no real improvement. Finally on April 21, it was determined she was experiencing toxicity from the Affinitor and stoped the medication. May 8th dotatate shows pneumonitis. Now we’re at a point of treating the inflammation with a much higher dose of steroids, oxygen and an inhaler, praying that the pneumonitis resolves itself with time. I wanted to see if anyone faced similar circumstances and had any tips for home remedies or techniques that helped with shortness of breath while we go through the process.

This article from cure today references pneumonitis as a possible side effect of cancer treatments, specifically noting Affinitor. https://www.curetoday.com/publications/cure/2015/summer-2015/pneumonitis-a-delayed-reaction
Beyond the side effects listed with the everolimus medication, wish I had read this articles in advance for a bit more information.

Separately, we recently spoke to a NET specialist and were looking forward to my mom starting care with this new team.

Fri, May 22 12:48pm · Affinitor - Pneumonitis in Neuroendocrine Tumors (NETs)

Hi,
I’m wondering if anyone had pneumonitis as a side effect from taking affinitor/everolimus? If so, what was your experience in alleviating shortness of breath? Did you use O2, steroids an inhaler? Many thanks.

Tue, Feb 25 7:19am · What NETS show on Gallium scan? in Neuroendocrine Tumors (NETs)

That’s a great idea for a topic!

Oct 7, 2019 · What topics do you want for the Neuroendocrine Support Group? in Neuroendocrine Tumors (NETs)

More topics from dietitians/nutritionist are welcomed! 🙂