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← Return to Affinitor - Pneumonitis
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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!
Replies to "I started Afinitor in November 2023 for metastatic NET I started with Mouth sores which got..."
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.
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I’m so sorry you’re going through this. Have you had a chest CT done? Afinitor can cause a lung condition.