Hello, @tinae. Welcome to the Lung Cancer support group - a group I know you weren't eager to join. I'm glad you found us though to support you on this new journey.
Similarly, you can use the search for other questions you may have or topics you may be looking for in the future, such as NSCLC or stage IV, radiation, etc.
I can certainly imagine this diagnosis came as a surprise and shock. How are you doing with this news? Do you know what mutation you have?
Thanks for the warm welcome Colleen. I appreciate your volunteering and your mentoring. Mayo connect has some great people.!!
Yes it was a complete shock. I had two girlfriends of mine that decided to get a low-dose CT scan to check the condition of their hearts and I thought I’d like to do that so I had my primary care physician set up a referral got the results my calcium cardiac score was zero but it showed lung malignancy.
I contact my doctor and said we need to act on this right away. That was March 11. I had my first chemo treatment April 11 in the interim it showed I have a mutation EGFR I don’t know the Exxon or those other numbers that was not shared with me, but I will be asking at my chemo treatment this week.
My insurance approved the Tagrisso and I took my third pill today. At this point I’m doing two rounds of chemo and the Tagrisso then we do a pet scan to see if anything‘s happening.
I’m considered 3.95 according to my doctor, it did not metastasize to my brain, which is great. It is, however, in the lymph nodes in my medistinal and in my Supra clavicular.
As you can imagine it’s been an emotional roller coaster not in a million years would I’ve ever thought I would have lung cancer. Cancer does not run in our family. I’m super healthy always take care of myself which I’m sure everybody says the same thing.
I don’t feel like I have cancer except when they give me the chemotherapy which makes you feel crappy, but I’m just going on every day trying to stay positive a great support team and Mayo connect.
Anyone on Tagrisso for non-small cell lung cancer?I was diagnosed with advanced stage lung cancer that was found by a fluke and I’m being told I have a mutation so they have put me on Tagrisso along with the chemo at some point, if these two things work radiation as well hopefully cure it. I could never imagined that I would’ve been diagnosed with lung cancer definitely not a candidate for that.
tinae, must have been quite a shock. I was diagnosed Feb 25, 2023 with NSCLC. Hadn’t smoked for over 50 years. It’s an EGFR mutation. Fortunately, it was caught early - Stage 1b. I had surgery in March and started chemo in April. 4 treatments over 12 weeks. I’ve been on Tagrisso since July and will be on it for 3 years. I’m now cancer free and my oncologist expects that it will not come back. Keep in touch through this group. People are happy to share experiences. Cancer treatment has had breakthroughs in recent years and Tagrisso is really a kind of miracle drug. A virtual hug to you.
Thanks for sharing. I’m glad you’re doing so well. Even though mine is much more advanced than yours, my doctor is very optimistic that I’ll end up just like you!! I’m going to remain positive and do what I’m supposed to. I’ll keep you updated.
I started using Tagrisso three weeks ago. Stage 4 Non small lung cancer with the EGRT mutation….was and still remain asymptomatic..age 70+ and still walking 3 miles a day and normal routines …physically no side effects so far …like taking an aspirin….head space however not great
Thanks for sharing. I’m glad you’re doing so well. Even though mine is much more advanced than yours, my doctor is very optimistic that I’ll end up just like you!! I’m going to remain positive and do what I’m supposed to. I’ll keep you updated.
I strongly relate to your story. I'm one of our family's genealogists, so I know we have no history of lung cancer or almost any kind of cancer at all. So, my wife of 6 months and I were shocked when I received my diagnosis in 2018. I was Stage 2b at the time. I had chemo (Carboplatin and Pemextered) and radiation.
Two years later, it metastasized to my brain. I had surgery to remove the cyst that was 3/4 the size of a golf ball and a few rounds of radiation. I have the EGFR Exon 19 mutation, so started Tagrisso in December 2020. I'm still taking an 80mg pill daily.
The FLAURA2 study last Fall showed that the combination of Tagrisso and platinum-based chemo like Carboplatin is even more effective than Tagrisso alone. At that time, it was only approved for Stage 3b and higher, but by now, it's been shown to be effective for earlier stages, as well.
Early on, I had diarrhea, and my fingernails would split very easily. The diarrhea faded away within a few months, and now I take 10mg of Biotin daily to strengthen my nails. I'm still working full-time as a NASA rocket scientist, walk between 3 and 5 miles a day, and am trying to exercise more to rebuild the muscles I lost in the first 2 years after the brain surgery. Since it's spring, I'm still putting in the vegetable garden and planting more flowers and trees around our property. Yah, most of the time I don't feel like I have cancer. My Nephrologist laughs every time I tell him I still plan to liver forever, or die trying.
Sounds like you have a great attitude, which is a big part of surviving and thriving! Let us know when you find out which type of EGFR mutation. I believe Tagrisso is only prescribed for 2 of them, but I'm still learning.
I started using Tagrisso three weeks ago. Stage 4 Non small lung cancer with the EGRT mutation….was and still remain asymptomatic..age 70+ and still walking 3 miles a day and normal routines …physically no side effects so far …like taking an aspirin….head space however not great
Welcome to Mayo Connect @kay1249, I'm glad that you are feeling good. I'm sure that makes it even more difficult for you and others in your life to accept that you have cancer. It takes time to process the weight of the diagnosis, and often it takes some help from others. Don't hesitate to reach out for help. Often your care team will have resources for patients too. Whatever you are feeling is expected.
I strongly relate to your story. I'm one of our family's genealogists, so I know we have no history of lung cancer or almost any kind of cancer at all. So, my wife of 6 months and I were shocked when I received my diagnosis in 2018. I was Stage 2b at the time. I had chemo (Carboplatin and Pemextered) and radiation.
Two years later, it metastasized to my brain. I had surgery to remove the cyst that was 3/4 the size of a golf ball and a few rounds of radiation. I have the EGFR Exon 19 mutation, so started Tagrisso in December 2020. I'm still taking an 80mg pill daily.
The FLAURA2 study last Fall showed that the combination of Tagrisso and platinum-based chemo like Carboplatin is even more effective than Tagrisso alone. At that time, it was only approved for Stage 3b and higher, but by now, it's been shown to be effective for earlier stages, as well.
Early on, I had diarrhea, and my fingernails would split very easily. The diarrhea faded away within a few months, and now I take 10mg of Biotin daily to strengthen my nails. I'm still working full-time as a NASA rocket scientist, walk between 3 and 5 miles a day, and am trying to exercise more to rebuild the muscles I lost in the first 2 years after the brain surgery. Since it's spring, I'm still putting in the vegetable garden and planting more flowers and trees around our property. Yah, most of the time I don't feel like I have cancer. My Nephrologist laughs every time I tell him I still plan to liver forever, or die trying.
Sounds like you have a great attitude, which is a big part of surviving and thriving! Let us know when you find out which type of EGFR mutation. I believe Tagrisso is only prescribed for 2 of them, but I'm still learning.
Matthew, thank you so much for your story. You sound amazing. So it’s been six years and you’re going strong. Do you show any signs of cancer at this point are you getting scans every three months? I realize the brain surgery sent you back, but you’re a Nassau rocket scientist. That has to be in an amazing career. I am on the chemo that you stated my second round is today and I’m taking Tagrisso with it. My oncologist is very optimistic. It had not metastasized to my brain yet. So at this point, we’re doing the chemo medication and after the third round of pet scan to see if anything is working. It’s definitely been an emotional roller coaster as I’m sure you know. I’m glad you’re doing so well. I am going to ask about the biotin for my nails to be proactive on that. I’ve only been on it for a week so the side effects have been very minimal at this point, but I am anticipating a few of them. I’ll keep you posted. I’m going to ask for more information on my mutation today, I’ll keep you posted. Enjoy your day!!
I started using Tagrisso three weeks ago. Stage 4 Non small lung cancer with the EGRT mutation….was and still remain asymptomatic..age 70+ and still walking 3 miles a day and normal routines …physically no side effects so far …like taking an aspirin….head space however not great
Hi Kay - for sharing. That’s great information. I’m been on it for a week. Haven’t noticed anything yet. I’m anticipating some of the side effects trying to be proactive on the nail situation. I turned 58 yesterday and was diagnosed about six weeks ago. I am almost stage 4, if it had been metastasized to my brain, it would’ve been considered stage 4, he told me I was 3.95.. PET scan after round three of the chemo and then we see if anything‘s working. I put in a previous post, you don’t feel like you have cancer you try to live your life as normal as you can but emotionally you’re right headspace is not good. Before you have cancer, you imagine that it’s this demon that takes control of your body and then when you find out you have it ,at least in my case, you wake up every day you take your medication you go to your appointments and you just live your life try not to think that you have it. Which always know it’s there. When and how were you diagnosed if you don’t mind sharing?
Matthew, thank you so much for your story. You sound amazing. So it’s been six years and you’re going strong. Do you show any signs of cancer at this point are you getting scans every three months? I realize the brain surgery sent you back, but you’re a Nassau rocket scientist. That has to be in an amazing career. I am on the chemo that you stated my second round is today and I’m taking Tagrisso with it. My oncologist is very optimistic. It had not metastasized to my brain yet. So at this point, we’re doing the chemo medication and after the third round of pet scan to see if anything is working. It’s definitely been an emotional roller coaster as I’m sure you know. I’m glad you’re doing so well. I am going to ask about the biotin for my nails to be proactive on that. I’ve only been on it for a week so the side effects have been very minimal at this point, but I am anticipating a few of them. I’ll keep you posted. I’m going to ask for more information on my mutation today, I’ll keep you posted. Enjoy your day!!
@tinae you're welcome. I was also 58 years young when I was first diagnosed!
The brain surgery was to remove the cyst in my left parietal lobe which controls muscles on my right side and coordination between the two sides. I didn't recognize the "mini seizures" as such because we had just moved. In my mind, I would work out, move boxes and furniture, and have muscle spasms the next day. I didn't think anything of it at the time. Today, I'm still doing PT to recover muscle tone and eliminate manageable pain.
Yes, I still get scans every 3 months, including a brain MRI, CAT scan, and blood tests. I've convinced my imaging center to schedule them all together so I only get poked once.
I did have a recurrence in February when there was increased activity in the area where the cyst was removed. My radiologist and oncologist consulted and agreed to give me one more round of radiation to kill the newly active region. Their theory is that the original brain surgery and radiation missed a few cells that took 3 years to grow large enough to be detected because I'm taking Tagrisso. The one round of radiation had no side effects at all.
Best of luck in your meeting today! I've started a Note on my phone for each of my doctors where I can record a question when I think of it. The first time, I forgot to look at my notes before the meeting, but I've got it down now! Have a good one!
@tinae you're welcome. I was also 58 years young when I was first diagnosed!
The brain surgery was to remove the cyst in my left parietal lobe which controls muscles on my right side and coordination between the two sides. I didn't recognize the "mini seizures" as such because we had just moved. In my mind, I would work out, move boxes and furniture, and have muscle spasms the next day. I didn't think anything of it at the time. Today, I'm still doing PT to recover muscle tone and eliminate manageable pain.
Yes, I still get scans every 3 months, including a brain MRI, CAT scan, and blood tests. I've convinced my imaging center to schedule them all together so I only get poked once.
I did have a recurrence in February when there was increased activity in the area where the cyst was removed. My radiologist and oncologist consulted and agreed to give me one more round of radiation to kill the newly active region. Their theory is that the original brain surgery and radiation missed a few cells that took 3 years to grow large enough to be detected because I'm taking Tagrisso. The one round of radiation had no side effects at all.
Best of luck in your meeting today! I've started a Note on my phone for each of my doctors where I can record a question when I think of it. The first time, I forgot to look at my notes before the meeting, but I've got it down now! Have a good one!
Matthew, you are an inspiration! My husband got a lobectomy to remove his tumor and had his rib met radiated and is now on Tigrasso. Do you know how they can tell is Tigrasso is working if there is no tumor to monitor? Thank you for your engagement on this site. You provide hope!!
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Thanks for the warm welcome Colleen. I appreciate your volunteering and your mentoring. Mayo connect has some great people.!!
Yes it was a complete shock. I had two girlfriends of mine that decided to get a low-dose CT scan to check the condition of their hearts and I thought I’d like to do that so I had my primary care physician set up a referral got the results my calcium cardiac score was zero but it showed lung malignancy.
I contact my doctor and said we need to act on this right away. That was March 11. I had my first chemo treatment April 11 in the interim it showed I have a mutation EGFR I don’t know the Exxon or those other numbers that was not shared with me, but I will be asking at my chemo treatment this week.
My insurance approved the Tagrisso and I took my third pill today. At this point I’m doing two rounds of chemo and the Tagrisso then we do a pet scan to see if anything‘s happening.
I’m considered 3.95 according to my doctor, it did not metastasize to my brain, which is great. It is, however, in the lymph nodes in my medistinal and in my Supra clavicular.
As you can imagine it’s been an emotional roller coaster not in a million years would I’ve ever thought I would have lung cancer. Cancer does not run in our family. I’m super healthy always take care of myself which I’m sure everybody says the same thing.
I don’t feel like I have cancer except when they give me the chemotherapy which makes you feel crappy, but I’m just going on every day trying to stay positive a great support team and Mayo connect.
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2 Reactionstinae, must have been quite a shock. I was diagnosed Feb 25, 2023 with NSCLC. Hadn’t smoked for over 50 years. It’s an EGFR mutation. Fortunately, it was caught early - Stage 1b. I had surgery in March and started chemo in April. 4 treatments over 12 weeks. I’ve been on Tagrisso since July and will be on it for 3 years. I’m now cancer free and my oncologist expects that it will not come back. Keep in touch through this group. People are happy to share experiences. Cancer treatment has had breakthroughs in recent years and Tagrisso is really a kind of miracle drug. A virtual hug to you.
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2 ReactionsThanks for sharing. I’m glad you’re doing so well. Even though mine is much more advanced than yours, my doctor is very optimistic that I’ll end up just like you!! I’m going to remain positive and do what I’m supposed to. I’ll keep you updated.
I started using Tagrisso three weeks ago. Stage 4 Non small lung cancer with the EGRT mutation….was and still remain asymptomatic..age 70+ and still walking 3 miles a day and normal routines …physically no side effects so far …like taking an aspirin….head space however not great
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Helpful -
Hug
1 Reaction@tinae, welcome! You've found a good group.
I strongly relate to your story. I'm one of our family's genealogists, so I know we have no history of lung cancer or almost any kind of cancer at all. So, my wife of 6 months and I were shocked when I received my diagnosis in 2018. I was Stage 2b at the time. I had chemo (Carboplatin and Pemextered) and radiation.
Two years later, it metastasized to my brain. I had surgery to remove the cyst that was 3/4 the size of a golf ball and a few rounds of radiation. I have the EGFR Exon 19 mutation, so started Tagrisso in December 2020. I'm still taking an 80mg pill daily.
The FLAURA2 study last Fall showed that the combination of Tagrisso and platinum-based chemo like Carboplatin is even more effective than Tagrisso alone. At that time, it was only approved for Stage 3b and higher, but by now, it's been shown to be effective for earlier stages, as well.
Early on, I had diarrhea, and my fingernails would split very easily. The diarrhea faded away within a few months, and now I take 10mg of Biotin daily to strengthen my nails. I'm still working full-time as a NASA rocket scientist, walk between 3 and 5 miles a day, and am trying to exercise more to rebuild the muscles I lost in the first 2 years after the brain surgery. Since it's spring, I'm still putting in the vegetable garden and planting more flowers and trees around our property. Yah, most of the time I don't feel like I have cancer. My Nephrologist laughs every time I tell him I still plan to liver forever, or die trying.
Sounds like you have a great attitude, which is a big part of surviving and thriving! Let us know when you find out which type of EGFR mutation. I believe Tagrisso is only prescribed for 2 of them, but I'm still learning.
-
Like -
Helpful -
Hug
2 ReactionsWelcome to Mayo Connect @kay1249, I'm glad that you are feeling good. I'm sure that makes it even more difficult for you and others in your life to accept that you have cancer. It takes time to process the weight of the diagnosis, and often it takes some help from others. Don't hesitate to reach out for help. Often your care team will have resources for patients too. Whatever you are feeling is expected.
-
Like -
Helpful -
Hug
1 ReactionMatthew, thank you so much for your story. You sound amazing. So it’s been six years and you’re going strong. Do you show any signs of cancer at this point are you getting scans every three months? I realize the brain surgery sent you back, but you’re a Nassau rocket scientist. That has to be in an amazing career. I am on the chemo that you stated my second round is today and I’m taking Tagrisso with it. My oncologist is very optimistic. It had not metastasized to my brain yet. So at this point, we’re doing the chemo medication and after the third round of pet scan to see if anything is working. It’s definitely been an emotional roller coaster as I’m sure you know. I’m glad you’re doing so well. I am going to ask about the biotin for my nails to be proactive on that. I’ve only been on it for a week so the side effects have been very minimal at this point, but I am anticipating a few of them. I’ll keep you posted. I’m going to ask for more information on my mutation today, I’ll keep you posted. Enjoy your day!!
Hi Kay - for sharing. That’s great information. I’m been on it for a week. Haven’t noticed anything yet. I’m anticipating some of the side effects trying to be proactive on the nail situation. I turned 58 yesterday and was diagnosed about six weeks ago. I am almost stage 4, if it had been metastasized to my brain, it would’ve been considered stage 4, he told me I was 3.95.. PET scan after round three of the chemo and then we see if anything‘s working. I put in a previous post, you don’t feel like you have cancer you try to live your life as normal as you can but emotionally you’re right headspace is not good. Before you have cancer, you imagine that it’s this demon that takes control of your body and then when you find out you have it ,at least in my case, you wake up every day you take your medication you go to your appointments and you just live your life try not to think that you have it. Which always know it’s there. When and how were you diagnosed if you don’t mind sharing?
@tinae you're welcome. I was also 58 years young when I was first diagnosed!
The brain surgery was to remove the cyst in my left parietal lobe which controls muscles on my right side and coordination between the two sides. I didn't recognize the "mini seizures" as such because we had just moved. In my mind, I would work out, move boxes and furniture, and have muscle spasms the next day. I didn't think anything of it at the time. Today, I'm still doing PT to recover muscle tone and eliminate manageable pain.
Yes, I still get scans every 3 months, including a brain MRI, CAT scan, and blood tests. I've convinced my imaging center to schedule them all together so I only get poked once.
I did have a recurrence in February when there was increased activity in the area where the cyst was removed. My radiologist and oncologist consulted and agreed to give me one more round of radiation to kill the newly active region. Their theory is that the original brain surgery and radiation missed a few cells that took 3 years to grow large enough to be detected because I'm taking Tagrisso. The one round of radiation had no side effects at all.
Best of luck in your meeting today! I've started a Note on my phone for each of my doctors where I can record a question when I think of it. The first time, I forgot to look at my notes before the meeting, but I've got it down now! Have a good one!
Matthew, you are an inspiration! My husband got a lobectomy to remove his tumor and had his rib met radiated and is now on Tigrasso. Do you know how they can tell is Tigrasso is working if there is no tumor to monitor? Thank you for your engagement on this site. You provide hope!!
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Helpful -
Hug
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