@troubletwo, wow, sorry you and your husband have had to go through all of this. This is the first time I've heard of two lung cancer diagnoses at the same time. I had a few thoughts as I read your reply.
Multiple EGFR mutations exist, and the type determines the treatment. For example, I have the Exon 19 mutation and have been on Targrisso for over four years with one possible recurrence. I had one additional round of radiation and am still cancer-free six months later. Tagrisso is a small-molecule targeted therapy that falls in the family of Tyrosine Kinase Inhibitors, or TKIs. While I've read research papers that say TKI resistance is inevitable, no one can tell you when resistance will develop. I know another patient research advocate who has been on it for seven years with only one recurrence, which was eliminated with radiation. That was four years ago. I also know someone who developed resistance within two years, though that IS rare.
Yes, Tagrrisso is way expensive. However, AstraZeneca manufactures Tagrisso and has a Patient Assistance Plan for uninsured patients. They'll ship the medication directly to your home for free if you qualify. I know. I was on that plan for three years because it used to include people with insurance. They changed the rules this Spring. They have other options as well, which you can find here: https://www.astrazeneca-us.com/medicines/Affordability.html
Since your husband is old enough for Medicare, sign up for Part D. This part provides prescription coverage, and the costs are currently capped at $2,000/year. I'm 64 and working full-time, so I recently found a Medicare advisor who outlined my options. In my case, I'm better off with my company's insurance plan. For people like me, AstraZeneca sends me a debit card with $26K on it. I use it to pay the $16.9 for a month's prescription and file for reimbursement. Since that amount puts me over the maximum out-of-pocket cost for the year, I receive 100% reimbursement, which I then put in a dedicated bank account and use to pay for the next month. There ARE ways not to pay almost $17K/month. I hope some of these ideas help you, as Tagrisso is the number one recommended treatment for certain types of EGFR mutation.
I highly recommend it if you haven't gotten a second opinion yet. The idea that Tagrisso magically stops working after three years is incorrect. Studies have shown that the chance of recurrence increases after three years, but that's all. I recommend you get a second opinion based on your oncologist's claim.
Lastly, be sure to take care of yourself. I don't know if being a caregiver is worse than being a patient, but my wife thought it was. In addition to eating well, getting outside, and sleeping enough, connect.mayoclinic.org, go2.org, and lungevity.org have support groups for caregivers as well as for patients, including helplines where you can talk with somebody. I'm signed up as a volunteer for the one at go2.org. You might also want to see if your area has a lung cancer support group.
I wish you and your husband all the best. Lung cancer life expectancy has increased by 44% over the last 10 years, so there is good reason for hope.
Thank you for your nice long newsy reply. Perhaps I did not mention that each lung has a different type of cancer?? The surgery to remove one lobe on the left side and had the protein that Tagrisso would take care of. The other lung they treated with radiation and that is now the lung that has the 7mm on exterior that they have decided to wait until January for the next ct scan to see what the next move will be. The 7mm, I guess is not EGFR related as the Tagrisso should have taken care of it over the past 3 years?? If they decide to do raditation again and it is close to bone, I am not excited as the radiation deteriorates bone and then subject to fractures.
My thoughts are maybe freeze, burn, or inject into the tumor????? We are Canadian and AstraZeneca is not generous with the Tagrisso, perhaps the reason to only put a 3 year study on Tagrisso here in Canada???? They were giving us a bit of a hassle after the first year of taking it, but the oncologist got on it as it was a 3 year study. The Patient Assistance Plan that US AstraZenica offers, I'm sure doesn't rate for us and anything that is passed is always for the low income society. We are blue collar, so just above that cut off line to qualify. Sad!