Lung Cancer EGFR Mutation Stage 4: What treatments did you have?

Posted by sophal168 @sophal168, Apr 4, 2023

Hi I’ve been diagnosed with stage 4 lung cancer EGFR Mutation !!!
Can this be cure? Anyone in here have the same mutation? And how is your treated?

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@flusshund

Francie, I noticed I never answered your primary question. Is Tagrisso a cure? No one knows yet. The FDA gave initial approval for its use in 2015 and regular approval in 2017, so it's really new. For what it's worth, the MD Anderson Oncologist said he would put me on it for three years, and continue quarterly testing (brain MRI, chest/abdomen CAT scan, MUGA scan, and blood tests) every three months for an additional three years. If the cancer didn't return, he would consider me cured. My Oncologist is more conservative and plans to leave me on it "forever" or until the potential negative side effects, which include heart failure, become unbearable.

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My oncologist in Chicago is recommending it for 3 years after 4 chemo treatments. My cancer is Stage 2 and she said she is expecting a cure. We shall see. Many unknowns. Good luck to you. Sending a hug and encouragement. We have to take it one day at a time, I guess.

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My mutation is different but here is an overview type summary of EGFR
https://www.healthline.com/health/lung-cancer/egfr-mutation-lung-cancer

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@sdm927

I have been researching 5—6 hours a day since my brother was diagnosed with SClung cancer in September 2022. He is doing treatments at the Mayo clinic. In his case they seem very against supplementing traditional chemo with other holistic stuff, ie. Vitamins, juicing or other commonly available stuff from the health food shop. He is fine with that. I have researched enough to know that MD Anderson has a different broader viewpoint, they seem to be open to incorporating things that if not proven to help you , may still be beneficial and thus may carefully expressed “ to have the placebo effect”.
Unless you are getting free medical care or at least free medication, I would say decided for yourself if you want to fight this with all you can or if you want to be a well meaning statistic in a pure clinical study. This too is noble but while there is a chance and hope……fight it! Wishing you a very motivated care taker and God’s grace.

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Do you know if it can be cure or not?

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@sophal168

Do you know if it can be cure or not?

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Hi @sophal168, Every person is different. You mentioned that your Cancer is Stage 4, and that may not be cureable, but it can likely be managed with the targeted therapy that you are taking.
I have a different gene mutation (ALK), and I am also stage 4. I have taken a targeted therapy for the past 3 years, and I’m doing well. I will continue to take that medication until it stops working, and at that time we will try a different treatment. My cancer will never be gone entirely, but so far, I’ve learned to manage it like a chronic condition.
I am treated at a smaller Mayo Clinic site, that confers with the doctors at the larger Mayo Clinic as needed.
Have your doctors been able to answer your questions about long term treatment, such as staying on the medication? Are you tolerating the medication well, any side effects?

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@flusshund

No, I didn't have mouth sores. I did have a friend advise me to start taking a laxative, Metamucil in my case, three days before each round of chemo and continuing until I was normal again. I forgot the first time and never again!

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Wondering about UTI as a side effect of chemo. Did anyone have that problem? Thanks.

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Same dx here....I'm told the goal is to remain stable or go into remission. No cure, however. I'm into my second month of taking Tagrisso. My main side effects are shortness of breath, cough, and loss of appetite. Occasional diarrhea, which is manageable by taking Immodium. If having these side effects indicate that the targeted therapy is working, then I welcome them all.

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@franciekid

lmd, how are you tolerating the Tagrisso. I just had surgery for Stage 1b, and even though there is no metastases, my oncologist wants to start Tagrisso. Also how are you paying for it? Thank you.

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I read on-line that it costs around $14,000./month if you pay out of pocket. It's a very specific drug ( a "boutique" drug - not for everyone) and therefore very expensive. I received my first month's worth of Tagrisso from AON Labs. I'm have Medicare plus Supplemental insurance, and my co-pay was still around $3500. A representative from AON assisted me in applying to Astra-Zeneca, as they have an assistance program based on your income. Thankfully, I was accepted into the program.

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@confident

I read on-line that it costs around $14,000./month if you pay out of pocket. It's a very specific drug ( a "boutique" drug - not for everyone) and therefore very expensive. I received my first month's worth of Tagrisso from AON Labs. I'm have Medicare plus Supplemental insurance, and my co-pay was still around $3500. A representative from AON assisted me in applying to Astra-Zeneca, as they have an assistance program based on your income. Thankfully, I was accepted into the program.

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Hi
From Down Under [ Australia ]
Back in November 2022, my wife was diagnosed with
stage 4 lung cancer, commenced with 10 sessions of brain radiation and then straight onto Tagrisso, 80mg daily .
Side effects are not nice, but when you compare the initial pet scan in Nov22 and the second one in Feb 23, it appears to be doing what they said, massive reduction in the amount of cancers.
Fortnightly full blood tests, then fortnightly visits to the oncologist, we are at the hospital every week, luckily we live on the Gold Coast with the John Flynn Hospital about 3 kilometres away. The blood tests confirm the drug is working and the hair is just starting to grow back .
Both of us are positive, but it is certainly a different life now
Our monthly cost of the Tagrisso is about the price of a cup of coffee, thanks the national Pharmaceutical Benefits Scheme underwritten by the taxpayer
It's early days just now but heading in right direction.
Cheers
Gary

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@franciekid

lmd, how are you tolerating the Tagrisso. I just had surgery for Stage 1b, and even though there is no metastases, my oncologist wants to start Tagrisso. Also how are you paying for it? Thank you.

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My insurance pays for it. The manufacturer (AstraZeneca) also has a program you can signup for that will assist if necessary. As far as tolerating it, I am doing well. I had mouth ulcers after the first week but healed quickly. Nothing else until this month. My bloodwork showed decreased platelets which is a side effect. Not sure how they are going to address this.

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@franciekid

My oncologist in Chicago is recommending it for 3 years after 4 chemo treatments. My cancer is Stage 2 and she said she is expecting a cure. We shall see. Many unknowns. Good luck to you. Sending a hug and encouragement. We have to take it one day at a time, I guess.

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Hi, I’m new to this site. I had lung vats surgery Oct of 2022. I have stage 2 lung cancer and the surgeon removed my right lower lobe and half of my right middle lobe resection. After the final path reports came back I have EGFR mutation.

EGFR p.L858R and several others.
I’m prescribed Tagrisso 80 mg daily since Nov-22. For 3 years .
I ve had all the usual side effects over these past 9 months I had a chest scan 3 months ago and everything was the same. Nothing new but in the last 3 months I have been getting headaches daily and experiencing some very painful back pain all the way from my waist to my shoulder all over and down my spine. Im slender and don’t have much cushion protecting my bones.
After my surgery the reports have shown some pleural effusion and after seeing my oncologist last week I’m scheduled for a MRI of the brain and a TTE test.
I also noticed that my CEA blood test came back 6.8 from 2.0 3 months ago. I’ve been experiencing weight loss, the nails splitting, queasy stomach, rashes etc. My Dr took me off the Tagrisso now for about 3 weeks to get these other tests done and see what the results are. My back is very painful and I’ve read that can also be a side effect of Tagrisso.
Has anyone experienced any of this?
Thank you for reading my long note!
Mary

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