1. < Neuroendocrine Tumors (NETs)

Affinitor - Pneumonitis

Posted by tsabe2 @tsabe2, May 22, 2020

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.

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Moderator
Colleen Young, Connect Director | @colleenyoung | Feb 4 3:54pm
In reply to @sophiarose "The strange thing is after my liver resection was done in 2019 I no longer had..." + (show)
@sophiarose

The strange thing is after my liver resection was done in 2019 I no longer had any carcinoid symptoms not even when my cancer returned
Anyway I am off Afinitor until my cardiologist gives me the ok to start back up
I will keep the site updated
Thank you

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@sophiarose, you may also be interested in the comments in this discussion:
- Affinitor - Pneumonitis
https://connect.mayoclinic.org/discussion/affinitor-pneumonitis/

How are you doing?

REPLY
1 reply
sophiarose | @sophiarose | Feb 5 7:43am
In reply to @colleenyoung "@sophiarose, you may also be interested in the comments in this discussion: - Affinitor - Pneumonitis..." + (show)
@colleenyoung

@sophiarose, you may also be interested in the comments in this discussion:
- Affinitor - Pneumonitis
https://connect.mayoclinic.org/discussion/affinitor-pneumonitis/

How are you doing?

Jump to this post

I am off Afinitor
My CT scan was perfect but I am still having a problem my heart races as soon as I do anything especially bending
My cardiologist wants me to see a pulmonary Dr I am trying to get a sooner than March 6th appt
My oncologist is now agreeing with my cardiologist and I shouldn’t take the Afinitor I should wait until March when I get my follow up scans
At that point I will be off Afinitor for 6 weeks
I took a good look at my journey that started in 2019 obviously my NETS are spreading at a fast pace so if I want to get ahead of it I need to step up my pace
I decided to make an appointment with Mayo in Jacksonville
I will be seeing Dr Starr on February 21st
I am hopeful!!!

REPLY
1 reply
sophiarose | @sophiarose | Feb 11 7:10am
In reply to @sophiarose "I am off Afinitor My CT scan was perfect but I am still having a problem..." + (show)
@sophiarose

I am off Afinitor
My CT scan was perfect but I am still having a problem my heart races as soon as I do anything especially bending
My cardiologist wants me to see a pulmonary Dr I am trying to get a sooner than March 6th appt
My oncologist is now agreeing with my cardiologist and I shouldn’t take the Afinitor I should wait until March when I get my follow up scans
At that point I will be off Afinitor for 6 weeks
I took a good look at my journey that started in 2019 obviously my NETS are spreading at a fast pace so if I want to get ahead of it I need to step up my pace
I decided to make an appointment with Mayo in Jacksonville
I will be seeing Dr Starr on February 21st
I am hopeful!!!

Jump to this post

Thank you

REPLY
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