Has anyone taken the targeted therapy osimertinib (Tagrisso)?

@1soc1soc, I've been on Tagrisso for 3 and a half years now. My Oncologist has always said he plans to keep me on it "until the negative side effects become unbearable." Not being able to afford it is one of those negative effects. But the possibility of heart damage with long-term use is right up there. I pressed him for details and he said it can either be muscular or electrical degeneration. At first, I was getting MUGA scans every 3 months, along with my brain MRI, CAT scan, and bloodwork. In my case, he stopped my MUGA scans after 2 years because my ejection fraction actually went up; plus, I'm also seeing a Cardiologist who has taken over monitoring my heart.

I haven't seen a study linking Tagrisso to short-term heart problems, but there is a link, and everybody's body is different.

If you have the time to do your own research, you can join the International Association for the Study of Lung Cancer at iaslc.org. Check out 'Lung Cancer 360' for more information than any of us lay people could ever process! The field is advancing very rapidly. Best of luck to you.

Northwest biotherapeutics is coming out with a vaccine for cancer right now. It’s approved in the UK. The FDA should be approving it Soon in the states, you should look it up.

@1socalgal, mollie2, Have you joined the EGFR resistors group through FaceBook? We of course still want you to participate in Mayo Connect discussions, but this group may be helpful to you too, as it’s made up of other EGFR patients.
https://www.facebook.com/share/g4ocRdSZX4SQNMGy/

I’m just shocked at how many people have this mutation it’s insane.

It’s always crazy to be diagnosed with lung cancer when it’s the last thing you ever thought you’d have.

I’ve been on it for a month and and I’ve been blessed to have other than diarrhea no side effects so I hope that they can get you down to 40 and you can feel comfortable.

I have always been very healthy. Take care of myself.

I had two girlfriends that decided to get a low-dose CT scam to check their hearts and I thought I want to do that so I go in and get it done my heart is great but I have a lung malignancy. I was shocked, what the heck so that was March 10 I’m on my third chemo right now.m while texting this and J have been on Tag for a month. I’m still trying to figure out how the hell I have lung cancer. I know the mutation and all that but still if my friends would not have shared with me and I would not have acted on it would’ve been stage four before I would’ve known.

why are you starting radiation? just curious....without any radiation, my brain tumors shrank significantly on tagrisso alone. i did have 5 rounds of radiation back in november because small amounts of edema managed to envelop several of my brain tumors, thus rendering the tagrisso not working as effectively on those particular tumors. they were slowly growing because of the edema. apparently, tagrisso has a hard time crossing fluid. i put myself on a low dose of mag sulfate and seemingly have not had a problem since. don't really know if the mag sulfate is working or it's just plain ole luck that, so far, no edema has returned. teresa

I am having chemo
first and then Tagrisso. Not too happy about that. I have Stage 2 EGFR.

My husband had Stage 2 EFGR NSLC RL upper lobectomy. He has had 2 rounds of chemo (badly tolerated) and his oncologist is planning Tagrisso next step. His coughing has increased since second chemo treatment. Nurse ordered steroid pack. Does this sound familiar to anyone?