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.

Interested in more discussions like this? Go to the Neuroendocrine Tumors (NETs) Support Group.

Teresa, Volunteer Mentor | @hopeful33250 | Jun 18, 2020

In reply to @tsabe2 "Thank you so much! The appointment is on June 12th. Looking forward to it! I will..." + (show)

Hi @tsabe2,

I see that your mom's appointment with the NET specialist was scheduled for 6/12. Was she able to see the doctor then? Any new recommendations? I look forward to hearing from you.

tsabe2 | @tsabe2 | Jun 18, 2020

In reply to @hopeful33250 "Hi @tsabe2, I see that your mom's appointment with the NET specialist was scheduled for 6/12...." + (show)

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🙏.

ja5747 | @ja5747 | Jun 18, 2020

In reply to @hopeful33250 "Hello @ja5747 and thank you for the update. I hope your oncology appointment was helpful. Did..." + (show)

Hi Teresa, I decided to take the advice of my oncologist and started Zeloda, the pill version of chemo, a week ago. At this time, we aren’t adding a companion drug. Afinitor is still an option for a future line.

Teresa, Volunteer Mentor | @hopeful33250 | Jun 18, 2020

In reply to @tsabe2 "Hi, thank you! We did meet with the NET specialist. Still wants to give my mom..." + (show)

I'm glad for the update, @tsabe2. Did you and your mom feel the doctor communicated well with you about your mom's condition?

Teresa, Volunteer Mentor | @hopeful33250 | Jun 19, 2020

In reply to @ja5747 "Hi Teresa, I decided to take the advice of my oncologist and started Zeloda, the pill..." + (show)

@ja5747 Thanks for letting me know. How are you feeling taking the Zeloda?

ja5747 | @ja5747 | Jun 22, 2020

I’ve only been on it a little over a week. So far, so good!

Teresa, Volunteer Mentor | @hopeful33250 | Jul 20, 2020

In reply to @ja5747 "I’ve only been on it a little over a week. So far, so good!" + (show)

Hello @ja5747

I see that it has been a little over a month since you started taking Zeloda. How are you doing?

ja5747 | @ja5747 | Jul 21, 2020

In reply to @hopeful33250 "Hello @ja5747 I see that it has been a little over a month since you started..." + (show)

Side effects (mouth sores, hand/foot syndrome, abdominal pain) started appearing shortly after I wrote my last post. Because of this, the second cycle was adjusted to 10 days on, 11 days off ( first cycle was 14 days on, 7 days off). Still have same side effects which are more intense and lasting longer than the first time. Cycle 3 will start this weekend, and we are going to try 7 days on, 7 days off, then repeat a second time. Hopefully this will mitigate side effects!

Teresa, Volunteer Mentor | @hopeful33250 | Jul 22, 2020

I so appreciate your update, @ja5747, and I'm sorry to hear of the side effects you have experienced. I pray that this next round of treatment will be more tolerable for you. Did the mouth sores cause you to lose weight or were you able to eat a somewhat normal diet?