New here: Looking for others who have NSCLC and information

How nice of you to check in on me, Colleen!

In a word: BUSY! In August I finished my Masters degree at the University of Minnesota, and October has been the Chicago Marathon for the second year in a row and our 50th wedding anniversary. My next Mayo visit in November will be the one where we make the decision to pause my immunotherapy treatments - there has been no evidence of disease for quite sometime and the team thinks it's time to take off the training wheels!

Here is a recent presentation I made for the charity I ran for in Chicago. This is to their New York City Marathon fundraising team and my portion begins around the 10:30 mark. Thanks again for checking!

Thank you so much!!you too!! I do hope they do online consultations or second opinion/therapy suggestions via email because we live very far away!:(

Ablation is a radio wave transmitter on the end of a sharp stick shoved into a tumor and then cooking it until it dies. I think it needs to be a solid tumor for it to work.

Oh my goodness! That is busy. But what an amazing update. There’s no slowing you down.

I’m impressed that you responded to my check in so quickly. Happy anniversary. 50 years is a fabulous milestone to cheer about.

Another marathon is pure madness (in a fabulous way) and whilst on treatment for lung cancer is nothing short of miraculous.

And in your spare time a Masters degree. Woah. May I ask an MA in what?

Hi Lisa,

I am sorry if I already replied to you, I have the hardest time on this site figuring out who I already responded to
Yes, the radiation is because the goal is to "cure" my cancer. Then I will go to Alectinib. The oncologists stated I would be on it for 3 years or more. My copay is $4000 a month, how are you paying? Does your insurance cover it all? It costs $18,000 a month where I live.

I am just worried as the area to be radiated is very close to my heart. I hope your scan is all clear-

april

Hi April,

I've been on Tagrisso for almost three years. Each daily pill costs $512 with insurance, or about $15,000/month. All of these new medicines cost around the same.

My Oncologist has a Social Worker who is highly skilled in working with the manufacturer, AstraZeneca in my case, to arrange a lower cost. We had to pay $2,000 one month, but have not paid anything other than that. I recommend checking with your Oncologist to see if they have a similar person in their office. Oncologists know the average person can't afford these drugs.

I hope everything works out for you.

Matthew are you on private insurance? I know when I was working, I had employer insurance and was able to take advantage of pharmaceutical company rebates for my very expensive RA biologics. When I went on Medicare I was no longer elegible for that. Fortunately, I needed to change biologic anyway so was able to start one that was administered in a doctor’s office and covered by part B. That all goes back to a legislative block on Medicare negotiating with Pharmaceutical companies.

April, I have employer insurance. I'm working my dream job as a NASA rocket scientist, so I may never retire!

I don't recall the details, but I'm not getting a rebate. It's a special program where my wife and I have to demonstrate that we pay at least 10% of our net income in medical expenses each year. I'm Stage 4 and have been getting tested every 3 months, so that's been easy to demonstrate. Sadly? Fortunately?

Hi Lisa! Thanks for checking in. Chest tube is out!! I met with the medical oncologist and they told me probably chemo will be needed but they also said we would wait to finalize that plan based on the genetic testing to see if targeted therapies might apply. They do still want to do the SBRT radiation on the small undetermined nodule on the right. I meet with radiation oncology tomorrow to discuss that. They are still saying treatment plans will be curative but I know that lung cancer is never really cured. I’m hopeful but still scared and just wish this was a bad dream.