Thank you so much for sharing your story. My hubby is now 82 and was and is holding his good shape, considering all he has been through. His diagnosis was NSCL cancer with EGFR market that qualified him for the 3 year study by Astrazentica. One lobe was surgically removed. Thoracic surgeon only noticed that a couple of lymph nodes were suspicious so reamed them out and 8 or so as precaution. Always when seeing some unknowns as far as possible metastic possibilities the medical team may have thought 3 years would show some signs of new malignancies that the Tagrisso would attack?? His 9 contrast ct scans have shown no activity. Perhaps if there was they may have continued?? A comment made was that after 3 years the strength of the pill fades?? He takes 80mg per
day. Both of his lungs were diagnosed with different cancers ??? and he never smoked. A shocker to day the least. Good Luck with yours, always good to hear “on remission “ and hope those are their words forever!!! 🦋
@troubletwo, I'm curious why your doctor would stop Tagrisso after 3 years. When I went to MD Anderson for a second opinion for my metastatic (to the brain) lung cancer, their oncologist told me two things:
1. No need to come back. Your doctors are doing everything I would have done. Do what they tell you.
2. His plan at the time was Tag for 3 years, followed by 3 more years of 3-month monitoring. If there was no recurrence, he would declare me "cured." (The only time I've ever heard that word.)
Ahh, the heady days of early discovery. A year later, my current oncologist told me he had no plan to stop Tagrisso until "the side effects become unbearable." (For me, those side effects include heart problems, but I'm being monitored by a cardiologist for a leaky valve anyway. Also, financial toxicity because I'm too young for Medicare.) I'll be on it 4 years in December, and I know another lung cancer advocate who has been on it for 9.
I know you haven't asked, but my recommendation is to ask your husband's oncologist why he would stop a successful treatment.
I still get 3-month brain MRIs, and probably will forever, which is how long I plan to live or die trying. 🙂 After 3 1/2 years, my CT scans are being reduced to every 6 months because my chest and abdomen have been clear all this time.
Your husband's doctor considers your husband's age, medical history, overall health, etc., which I don't know. But I am curious about the persistence of this 3-year "rule" for Tagrisso that I thought was over.
My hubby had double lung cancer with different cancers in each lung. The left lung had one lobe removed and the thoracic surgeon saw a bit of uncertainty in two lobes so cleaned them out and others in the vicinity and said that this tumor was a tumor that could metastasize. Believe a Stage 2. I asked if there were any study's for this EGFR type and there was a 3 year one, so we went with it as the cost of the Tagrisso is beyond anyones means of being able to afford. The oncologist did say that one's body gets immune to the drug and it isn't effective after 3 years??????? We don't know if the Tagarisso targeted any tumors as his three years are up now, and from a year ago they are watching an exterior lung node at 4mm that is now 7 mm so another enhanced ct scan in January will tell them where they are going with this?? Presently my hubby is on no treatments for his lungs. Everything seemed to be stable over the past 3 years except for the 4 mm exterior one??? They chose not to go the Chemotherapy route due to him being 79 years at the time.
My hubby had double lung cancer with different cancers in each lung. The left lung had one lobe removed and the thoracic surgeon saw a bit of uncertainty in two lobes so cleaned them out and others in the vicinity and said that this tumor was a tumor that could metastasize. Believe a Stage 2. I asked if there were any study's for this EGFR type and there was a 3 year one, so we went with it as the cost of the Tagrisso is beyond anyones means of being able to afford. The oncologist did say that one's body gets immune to the drug and it isn't effective after 3 years??????? We don't know if the Tagarisso targeted any tumors as his three years are up now, and from a year ago they are watching an exterior lung node at 4mm that is now 7 mm so another enhanced ct scan in January will tell them where they are going with this?? Presently my hubby is on no treatments for his lungs. Everything seemed to be stable over the past 3 years except for the 4 mm exterior one??? They chose not to go the Chemotherapy route due to him being 79 years at the time.
@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.
@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!
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Thank you so much for sharing your story. My hubby is now 82 and was and is holding his good shape, considering all he has been through. His diagnosis was NSCL cancer with EGFR market that qualified him for the 3 year study by Astrazentica. One lobe was surgically removed. Thoracic surgeon only noticed that a couple of lymph nodes were suspicious so reamed them out and 8 or so as precaution. Always when seeing some unknowns as far as possible metastic possibilities the medical team may have thought 3 years would show some signs of new malignancies that the Tagrisso would attack?? His 9 contrast ct scans have shown no activity. Perhaps if there was they may have continued?? A comment made was that after 3 years the strength of the pill fades?? He takes 80mg per
day. Both of his lungs were diagnosed with different cancers ??? and he never smoked. A shocker to day the least. Good Luck with yours, always good to hear “on remission “ and hope those are their words forever!!! 🦋
My hubby had double lung cancer with different cancers in each lung. The left lung had one lobe removed and the thoracic surgeon saw a bit of uncertainty in two lobes so cleaned them out and others in the vicinity and said that this tumor was a tumor that could metastasize. Believe a Stage 2. I asked if there were any study's for this EGFR type and there was a 3 year one, so we went with it as the cost of the Tagrisso is beyond anyones means of being able to afford. The oncologist did say that one's body gets immune to the drug and it isn't effective after 3 years??????? We don't know if the Tagarisso targeted any tumors as his three years are up now, and from a year ago they are watching an exterior lung node at 4mm that is now 7 mm so another enhanced ct scan in January will tell them where they are going with this?? Presently my hubby is on no treatments for his lungs. Everything seemed to be stable over the past 3 years except for the 4 mm exterior one??? They chose not to go the Chemotherapy route due to him being 79 years at the time.
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1 Reaction@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!