Living with lung cancer - Introduce yourself & come say hi

Goodness! I can certainly relate. I was diagnosed in April 2018, had a lobectomy removing the quadrant in which the tumor was contained, declined adjuvant chemo, and opted for surveillance. I had good scans every three months for almost two years when CT followed by PET and biopsy showed metastitis to the adrenal gland and brain. I had gamma knife to the brain and started on the targeted treatment, Tagrisso the spring of 2020. I was on 80 mg for several months, but was not tolerating and was tapered to 60mg and then 40mg. The Tagrisso has been successful for me now thus far. I go every three months for CT abdomen/chest/pelvis, brain MRI, bloodwork, and doctor visits; and my reports continue to be “stable” which is a word we love to hear. I thank God for my doctors at Mayo Clinic, for my treatment, and my husband who is with me every step of the way. I will be 76 in January. I am tired much of the time, which I attribute to a combination of cancer, treatment, and age.

Hello. You’ve certainly gone through a lot! I didn’t have any surgeries or radiation. I wouldn’t be here if not for my husband and my team at the Mayo. My husband initially sent my records to the Mayo. I’ve been taking a research med since August 2023 and so far it’s been controlling the cancer.

I was diagnosed with dipnech in 2018 after having half my right lung removed due to tumours large and solid. After years of shortness of breath and cough which the Drs and I thought were due to a heart condition I have it was found I have dipnech. Now 6 years later I am to have more surgery in a few weeks due to the position of another slow growing tumour. It seems that although I have numerous other small ones they are only a problem if they become solid or they grow more quickly or the position of them. I obviously had dipnech for many years,
We can live a normal life , the cough and shortness of breath we take in our stride. Good luck all.

@anniebannie, You are a beautiful example of someone living life along with having stage 4 lung cancer. I'm glad that Tagrisso has been effective for you for four years. Thank you for sharing your story, and that you have been successful with a reduced dose.
The fatigue from these types of meds is real. Have you found ways to combat the fatigue? I try to take naps, and caffeine helps.

Going through chemoradition for ls 3 sclc. Has anyone had prophylactic brain radiation with success?

Welcome @tvichkon, I'm glad you found us. Do you have a doctor that has suggested prophylactic brain radiation? I'm assuming that we're talking about whole brain radiation, or is there a specific area in the brain that is concerning?
Are you having radiation to the lungs, along with your chemo?

@tvichkon, I believe that @tymish17 and @vlpr have mentioned prophylactic brain radiation or prophylactic cranial irradiation (PCI).

I can imagine whether to have prophylactic brain radiation or not is a hard decision to make. Small cell lung cancer (SCLC) has a high risk for brain metastases, but what if you don't have metastasis? Age and other health factors also go into the decision making.

@tvichkon, what did you decide and what helped you make the decision?

I'm waiting to speak to my oncologist. It hasn't spread yet and I will be starting immunotherapy in a couple of weeks. I'm just not able to find enough data to support a decision yet

Hi, my name is Tina. I am 58 years old and I was diagnosed last March on a random test and diagnosed with stage 3C non-small cell lung cancer.

Was not prepared for that!

After a biopsy of a lymph node in my chest, they determined that I had a mutation which allows me to take Tagrisso. I’ve been on that since last April things are behaving as my oncologist likes to call them.

Most days I forget that I have lung cancer and then every now and again your reminded of it.

Hi Tina @tinae, I saw some of your other posts and wanted to welcome you to the group. I'm glad you found us. My oncologist likes to say that I'm boring. I'll take boring or behaving any day!
We are fortunate to have access to these targeted therapies. I'm on a different medication for ALK positive lung cancer. I believe it's the reason that I'm still here today (almost 5 years after diagnosis). I have some side effects, certainly more forgetful, but I'm doing well.
Is the plan to keep you on Tagrisso indefinitely? Are you still working?