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 | Jul 22, 2020

In reply to @ja5747 "Eating is more difficult, but I have managed to make it work so have not lost..." + (show)

@ja5747 That is a good thing. You need to keep a balanced diet/nutrition when you are going through treatment. Take care!

badi | @badi | Jun 26, 2023

Hi,

What are you using for the mouth sores? Hubby experiences terrible sores on his lips and the tip of his tongue. Everything is burning that he tries to eat. We have tried to rinse with salt water and some over-the-counter medicine for cold sores. No improvement.

davisnrn | @davisnrn | Jun 27, 2023

I have been on Afinitor 4 months and mouth sores have been a recurrent issue. I have found most relief from Dexamethasone liquid used as a mouthwash when sores begin. it requires a prescription and has worked better than miracle mouthwash for me. I saw in the information enclosure with Afinitor about a clinical trial with Dexamethasone swish and spit for mouth sores in a group of breast cancer patients with better results than the control group. my oncologist was agreeable to let me use it and it has been helpful.

elliwiemers | @elliwiemers | Jun 28, 2023

I experienced mouth sores while on Tucatinib last summer, and a little now on Tagrisso. An Rx called Magic Mouthwash with lidocaine helps me.
Best of luck!
Elli

sophiarose | @sophiarose | Jan 25 6:30am

I started Afinitor in November 2023 for metastatic NET
I started with
Mouth sores which got better
Rash which was treated with topical and is a lot better
Now!!!
An erratic pulse while on medication gets better off medication
Did an EKG it was ok
Off medication for 6 days now and I get sooo…. Winded my heart pounds when I do anything other than rest
My Oncologist wants me to start again insists it’s not the medication
My Cardiologist doesn’t want me to start again until he sees me in 4 days
(Unfortunately I am on vacation and only have 2 days left) thank goodness
Anyone else had this side effect with Afinitor
I have been on this rollercoaster for 5 years numerous procedures and surgery
However this is the first time I have truly SCARED!!!
Please let me know what your experience was
Thank you. And all my best!

lindabees | @lindabees | Jan 26 8:58am

In reply to @sophiarose "I started Afinitor in November 2023 for metastatic NET I started with Mouth sores which got..." + (show)

I’m so sorry you’re going through this. Have you had a chest CT done? Afinitor can cause a lung condition.

sophiarose | @sophiarose | Jan 26 11:03am

In reply to @lindabees "I’m so sorry you’re going through this. Have you had a chest CT done? Afinitor can..." + (show)

No I haven’t had a CT done
I will tell my cardiologist on Monday
Thank you so much for the information

lindabees | @lindabees | Jan 26 2:15pm

In reply to @sophiarose "No I haven’t had a CT done I will tell my cardiologist on Monday Thank you..." + (show)

@sophiarose
You’re very welcome! Here’s a a section from the Mayo informational page about afinitor (everolimus) that talks about the pneumonitis.

This medicine may cause a serious lung problem called interstitial lung disease or non-infectious pneumonitis. Check with your doctor right away if you have chest pain, chills, cough, fever, or trouble breathing.

normaf9 | @normaf9 | Jan 26 5:59pm

In reply to @sophiarose "I started Afinitor in November 2023 for metastatic NET I started with Mouth sores which got..." + (show)

I have not been on Afinitor but experience the same breathless, weak symptoms as you describe. Diagnosed in 2017 and had experienced the weakness two or three years prior. Possibly the serotonin secreted from cancer causes these side effects. SSAs help some.

sophiarose | @sophiarose | Jan 27 11:22am

In reply to @normaf9 "I have not been on Afinitor but experience the same breathless, weak symptoms as you describe...." + (show)

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