New here: Looking for others who have NSCLC and information

Hi April (@aprilradek), These long strings of responses can get confusing with multiple conversations happening at once. In case it's helpful, you can see all of your posts by clicking the person icon in the upper right of the page (Profile and Settings) and My Profile. Then on the left, select Comments. You'll see all of your posted comments there.
"Cure" is great, it sounds like you are in good hands.
Like Matthew said, thankfully there are co-pay assistance programs through most of the manufacturers. Genetech makes Alesensa. You'll get the medication through a 'specialty' mail-order pharmacy, your local CVS won't carry it. Your oncologist office or the pharmacy can work with Genetech for copay assistance (https://www.genentech-access.com/patient.html). I completed the application, was given a patient number, and was able to share that with my pharmacy in order to reduce the copay amount. Your health insurance coverage is likely different, but I pay $5 in January, and don't pay anything else for meds all year. It's literally a lifesaver and bank-account-saver.

@elechar2023, welcome to Mayo Connect. There are several very knowledgeable EGFR patients here. I'm glad that you found us.
I have a different mutation (ALK) and have only taken a targeted therapy/pills. I was diagnosed over three years ago. There are many success stories in the targeted therapy realm. How long ago was your husband diagnosed? Did he start with the Tagrisso right away, or have other treatments? Is he experiencing any side effects?

He just got the news of a relapse after a successful lobectomy in 2021 and no other treatment needed at that time..so they ‘ve put him on Tag just last week no big side effects thank God!!

So much for online contact!!i just got this reply from the actual international patients department:
“Thank you for your email. Please note that at this time, we are not able to offer a virtual, remote second opinion, video conference or an online consultation. Please let us know if you are interested in an onsite appointment at Mayo Clinic Rochester and we would be happy to assist.”
🙁

@elechar2023, oh I didn't realize that you didn't live in the US. Virtual care has to adhere to federal guidelines and is only available for international patients IF the provider you are seeing is also licensed where you live.

April
How is it going with you? I start radiation (SBRT) for a nodule in my right lung that before my stage changed, they planned to just watch. I’m actually better with that plan versus waiting to see if it becomes cancer and going through surgery all over again.

Then I meet with medical oncology again to finalize treatment for the left lung. We are waiting for genomic testing but in my research, regardless of that testing, adjuvant chemo makes sense. I plan to ask about that. They mentioned chemo initially to me at my first oncology appointment but also mentioned maybe not depending on my test results.

Have you finalized your treatment plan?

Hi DragonSparks,

I feel better now that I know the next step. I am also going to start SBRT radiation I will meet the radiation oncologist on the 16th. My one lymph node near my heart that has some live cancer found during surgery will be radiated-
When do you start? My genomic testing showed the ALK marker, but my team still wanted to do chemo first- then surgery, then after radiation the targeted ALK therapy-
The local cancer center where I live wanted to do the targeted ALK therapy and then surgery- but my second opinion up at Stanford wanted chemo first to shrink the tumors pre-surgery- surgery, now radiation then the ALK therapy- I find the waiting for a treatment plan the hardest part- How are you handling all of this? I hope you have support at home. I find this site helps and I have a "cancer buddy" via Imerman Angels, a nonprofit that hooks you up with someone who went through a similar diagnosis etc. I call her or text her when I need some comfort. My husband tries but it isn't the same.
Keep me posted- april

So they didn’t removed the lymph node during surgery? I’m still waiting for my treatment plan. I met with oncology on 11/14. They were waiting on my generic marker tests. What is imerman angels? I’d love to have a buddy. I joined a couple of Facebook groups and they are somewhat helpful, but also not at the same time. Hard to explain. Would love info if it’s something available to anyone.

Hi Dragon Sparks,

The surgeon did remove the lymph node, but I guess if it comes back showing live cancer they radiate the surrounding tissue? I think I told you my genetic marker showed ALK. So after radiation, I will go on a medicine called ALECENSA.
Imeran Angels is a nonprofit- I get care at Stanford and the Social Worker hooked me up with the non-profit https://imermanangels.org/.
It took two months before I had a telephone screening, then I was given the name of my cancer support person and we talk about once a week. Sometimes we just text- It is very comforting to talk to someone who has been through what I am going through- They will ask you lots of questions about yourself and what is important to you in a cancer mentor.
Keep me posted-
april

Thank you April! I reached out to them and have a chat scheduled for 11/27.