Welcome @nadine78, Hearing that you have lung cancer is one of the most difficult things you'll face. There is no reason for it, and it can be hard to process. It does get easier over time, but we'll likely never have all the answers that we want. (I was diagnosed with the ALK mutation over 6 years ago).
Have you had support from family or friends? How are you tolerating the Sevabertinib? It's good that you found the trial.

@nadine78
WOW is all I can say....first time finding someone using Seva. I can't, I mean I really can't imagine how shocking, at your age, to be given a diagnosis like you have. (I am 71 yrs young, never smoked, ran my own fitness business for 10 yrs in my younger years, jogged up until my knees gave in, and still practise Restorative Yoga.
I understand a bit about the incredibly shocking event that led to your diagnosis. I was symptom free and my 3.3 cm mass was found incidentally. I also have HER2. After a rt lower lobectomy in Feb/25, I was "cancer free", until my first check up, when I found out it had mestastasized to both lungs, liver, spleen and now brain. (in 5 mos).
I'm curious how you were able to actually start taking Seva? Is it available in Quebec? Not in Ontario. I am in a clinical study at Princess Margaret in Toronto. It's a randomized study, so I could have to start with the standard infusion treatment, OR, I could start with Seva. The trial has many, many tests ahead of actually starting the treatment. I find out on the 25th of this month which one I get. It's a cross-over study, so if the standard is not working, I get crossed over to Seva. I can't tell you how difficult it's been wading through weeks and weeks of tests, then radiation treatment for my brain, and finally seeing a date I actually get into treatment. Trying NOT to complain bc Princess Margaret is an amazing cancer hospital and their facilities are sometimes unbelievable to me.
Please tell me more about taking Seva. I have read the list of side effects, but not sure if they are regular, tolerable ones, or something that may knock me out of commission.
Did you start on a lower dose, then triate up, or is the dosage dependant on the type of cancer? How often are you being monitored to assess the drug? Do you feel any better since taking it? Has your cough subsided? How about fatigue? If you are comfortable sharing your your journey thus far, I would be grateful.
I'm afraid that as I wait for any treatment, it is spreading even more. I understand about the aggressiveness of this mutation and I have a good imagination.
I saw your initial post, but was unable to reply clearly as I had JUST had 2 days of brain radiation. I live in south western Ontario, south of Hamilton in a small rural area called Norfolk County. We travel 3 hrs (6 round trip) for every appt. The hospital does book as many app'ts and tests required on the same day.
I just really just want to start treatment soon.
Thanks again for finding me.