Osimertinib

[litoreggie]

Does anyone has experience with Osimertinib? We are so lucky to find that Dad does not need Chemo and can right to a pill🙏🏻

[Denzie Moderator Volunteer]

Scifiknitter will be checking in. I’m pretty sure she was on it for a bit. This is excellent news as it was found to have improved outcomes over standard TKI inhibitors.

Very glad for your dad that he has this option. I’ll be watching for updates.

[litoreggie in reply to Denzie]

Thank you, Denzie ❤️

[woonsin]

I have been on 80mg OSIMERTINIB since January.It seems ok to me.I am sure you would have same outcome,if not better.I would be pleased to hear more from you in due course.Meanwhile pray hard for God's mercy.

[litoreggie in reply to woonsin]

Thank you. I hope this goes well and continues to help you!

[Michele38]

We just got the news that my dad didn’t need to start chemo and just started this medication as well. Hoping for the best. Has yours started taking this drug yet? Any side effects?

[litoreggie in reply to Michele38]

He hasn’t started yet. Probably sometime this week so I will keep you posted

[Michele38 in reply to litoreggie]

Ok, I will too if anything comes up. You guys are in my thoughts and prayers.

[litoreggie in reply to Michele38]

You too❤️

[litoreggie in reply to Michele38]

Update- my Dad had his lower legs, ankles and feet swell up since starting the medication. He also said he has a pain in the upper thigh. We are keeping a close eye on it and called the Dr. who told us to keep taking it unless there is abnormal heart beating. That’s all so far

[Michele38 in reply to litoreggie]

Ugh, hate all the side effects. How’s your dad dealing with them so far?

[litoreggie in reply to Michele38]

Now he lost more weight 🙁 he’s down to 115. We got his weight up to 123 before starting the medication.

[Michele38 in reply to litoreggie]

I’m sorry to hear that. Have you guys tried Ensure or any other high-cal supplements? How’s he feeling?

[litoreggie in reply to Michele38]

He’s really picky and won’t drink Ensure due to the sugar. He feeling tired a lot but the coughing does seem to be going down

[Michele38 in reply to litoreggie]

Good to hear that his cough is lessening!

[phxguy]

Great news! Sending positive thoughts and prayers for a good outcome.

[scifiknitter Blogger]

I was on Osimertinib for 18 good months, 80 mg daily. My quality of life was very high - much of the time I felt almost back to normal. Some people have more issues with side effects than I did. In general it seems to be one of the best tolerated targeted therapies.

Side effects I experienced:

- a transient rash of red dots on my legs at the beginning of treatment.

- a nasty rash on my arms which I'm nearly certain was the result of sun exposure. Use sun block and protective clothing!

- intermittent joint pain, especially in back, hips and knees. If you have an exercise program, you may have to modify it.

That's about it. My appetite was good, I gained 20 pounds while I was taking it and was not fatigued.

All the best to your dad. Wishing him minimal side effects and a good long run.

Anita

[litoreggie in reply to scifiknitter]

Thank you for all the information, Anita

[woonsin in reply to scifiknitter]

Well done !

[FtB_Peggy]

Great news, please keep us updated!