I seem to be the only one where Tagrisso affected the heart. The problem is prolongation of the QTc that showed up in my EKG (that I discussed several days ago). This is not a good problem to have and it provoked a lot of questions in my head. I started wondering if I should talk to cardiology? I then read a comment that said QTc and aerobics are incompatiible, and at that point I sent an email to my primary raising all kinds of questions. She, in turn, contacted the Chief of Cardiology who checked out my EKGs and concluded that he doubts very much if I have a QTc problem at all. She sent me his analysis and when he cited "U waves," I rolled my eyes and surrendered. My oncologist will receive the analysis. At the end of the month I'll have another EKG and the machine will calculate my QTc. Can that calculation be trusted?
@1socalgal, I can imagine that you are concerned about the prolongation of QTc. Do you know about cardio-oncology?
Cardio-oncology offers expertise in addressing heart problems, potential or current issues during cancer treatments. At Mayo Clinic for example, the Cardio-Oncology Clinic (https://www.mayoclinic.org/departments-centers/cardio-oncology-clinic/overview/ovc-20442193) evaluates people prior to cancer treatment and patients who have experienced side effects due their treatment.
I'm glad that cardiology is now involved in monitoring your case. Sounds like it is not only concerning but also frustrating with no clear answers.
Cardio-oncology sounds perfect for me. Better yet: a cardiologist who specializes in the heart's electrical system. Keck Medical of USC has/had such a specialist who treated my husband, but I'm not at Keck. In any event my concern about my QTc has lessened since the Chief of Cardiology reviewed my ECGs and essentially said the QTc result calculated by the machine is only part of the story. He looked at the U-waves and said he didn't see a QTc problem. His analysis was sent to my oncologist, and now I'm wondering if he's going to re-evaluate the validity of the machine's calculations. Tagrisso is known to have heart-related side effects and when the ECG machine produces results that align with expectation, the conclusion is apparent. Or is it? The Chief of Cardiology ignored the Tagrisso connection and simply evaluated the ECG scans. If my next QTc results continue moving down, all of this may well be moot for me. But the question remains (at least in my head): what should oncologists make of the ECG results calculated by the machine?
Cardio-oncology sounds perfect for me. Better yet: a cardiologist who specializes in the heart's electrical system. Keck Medical of USC has/had such a specialist who treated my husband, but I'm not at Keck. In any event my concern about my QTc has lessened since the Chief of Cardiology reviewed my ECGs and essentially said the QTc result calculated by the machine is only part of the story. He looked at the U-waves and said he didn't see a QTc problem. His analysis was sent to my oncologist, and now I'm wondering if he's going to re-evaluate the validity of the machine's calculations. Tagrisso is known to have heart-related side effects and when the ECG machine produces results that align with expectation, the conclusion is apparent. Or is it? The Chief of Cardiology ignored the Tagrisso connection and simply evaluated the ECG scans. If my next QTc results continue moving down, all of this may well be moot for me. But the question remains (at least in my head): what should oncologists make of the ECG results calculated by the machine?
@1soc1soc, I've been on Tagrisso for 3 and a half years now. My Oncologist has always said he plans to keep me on it "until the negative side effects become unbearable." Not being able to afford it is one of those negative effects. But the possibility of heart damage with long-term use is right up there. I pressed him for details and he said it can either be muscular or electrical degeneration. At first, I was getting MUGA scans every 3 months, along with my brain MRI, CAT scan, and bloodwork. In my case, he stopped my MUGA scans after 2 years because my ejection fraction actually went up; plus, I'm also seeing a Cardiologist who has taken over monitoring my heart.
I haven't seen a study linking Tagrisso to short-term heart problems, but there is a link, and everybody's body is different.
If you have the time to do your own research, you can join the International Association for the Study of Lung Cancer at iaslc.org. Check out 'Lung Cancer 360' for more information than any of us lay people could ever process! The field is advancing very rapidly. Best of luck to you.
I’ve been on it since end of November 2023. My side effects are mild. Random diarrhea, fatigue, dry hair and nails, rash that antibiotic cream cleared up. The first month, I also had a dull, constant headache until I figured out I needed to up my water intake. I also had mild nausea but that’s gone too.
Those are my symptoms too. I’ve been on 80mg for just three weeks and I’m very worried what it’s doing to the rest of my body…I see the oncologist next week for routine follow up. I hope I can get more of my life back
Those are my symptoms too. I’ve been on 80mg for just three weeks and I’m very worried what it’s doing to the rest of my body…I see the oncologist next week for routine follow up. I hope I can get more of my life back
Hi @mollie2, I have experience with a different targeted therapy, for an ALK mutation, not EGFR. Targeted therapies can have life threatening side-effects and other debilitating side-effects. I've found that the debilitating side effects can sometimes lessen over time. For some people reducing a dose can be helpful, but still very effective. From the ALK perspective, a reduced dose is not uncommon at all, but there's not a lot of published research around this because the medications are relatively new when compared with traditional chemo, especially for early-stage lung cancers. The clinical trials for these meds often lock in a dose early in the trial, and the researchers don't have much chance to change it without starting over. The FDA is starting to make the process more flexible which will help with dose ranges for future medications.
You can't sustain being miserable for the next number of years. Hopefully your oncologist may have suggestions to deal with some of the side effects, and hopefully they are able to present you with options.
Have you had a chance to speak with your doctor about what you're experiencing?
Hi @mollie2, I have experience with a different targeted therapy, for an ALK mutation, not EGFR. Targeted therapies can have life threatening side-effects and other debilitating side-effects. I've found that the debilitating side effects can sometimes lessen over time. For some people reducing a dose can be helpful, but still very effective. From the ALK perspective, a reduced dose is not uncommon at all, but there's not a lot of published research around this because the medications are relatively new when compared with traditional chemo, especially for early-stage lung cancers. The clinical trials for these meds often lock in a dose early in the trial, and the researchers don't have much chance to change it without starting over. The FDA is starting to make the process more flexible which will help with dose ranges for future medications.
You can't sustain being miserable for the next number of years. Hopefully your oncologist may have suggestions to deal with some of the side effects, and hopefully they are able to present you with options.
Have you had a chance to speak with your doctor about what you're experiencing?
Thank you very much ! I just started Tagrisso three weeks ago and have my first blood test and oncologist appointment follow up in one week. So I’m looking forward to the results and feedback. I’m hoping to try the 40mg pill and see if I feel better…I’m used to being active…BTW my original tumor was 3.2cm which barely puts me in the 1B category for further treatment…..Being very cautious to make a compromised choice going forward….again thanks !!
I was under the impression that it's been established that Tagrisso and some other LC meds can have an impact on the heart. I've not seen a discussion of what the impact actually is, but in my case it appeared to be QTc - prolongation of the heart beat. Given how few responses there've been to my comments, I seem to be among a very very few who have any concerns about ECG results. Even then, upon review of my ECG scans, cardiology concluded that I don't actually have a QTc problem at all. Now that's the way to make your problems go away.
I'll check out iaslc.org. It's amazing what you can learn by poking around different sources. It was after such a poking around that I started taking my Tagrisso at night.
I was under the impression that it's been established that Tagrisso and some other LC meds can have an impact on the heart. I've not seen a discussion of what the impact actually is, but in my case it appeared to be QTc - prolongation of the heart beat. Given how few responses there've been to my comments, I seem to be among a very very few who have any concerns about ECG results. Even then, upon review of my ECG scans, cardiology concluded that I don't actually have a QTc problem at all. Now that's the way to make your problems go away.
I'll check out iaslc.org. It's amazing what you can learn by poking around different sources. It was after such a poking around that I started taking my Tagrisso at night.
@1socalgal, mollie2, Have you joined the EGFR resistors group through FaceBook? We of course still want you to participate in Mayo Connect discussions, but this group may be helpful to you too, as it’s made up of other EGFR patients. https://www.facebook.com/share/g4ocRdSZX4SQNMGy/
@1socalgal, mollie2, Have you joined the EGFR resistors group through FaceBook? We of course still want you to participate in Mayo Connect discussions, but this group may be helpful to you too, as it’s made up of other EGFR patients. https://www.facebook.com/share/g4ocRdSZX4SQNMGy/
I’ve been on Tagrisso for a little over three years. I was unable to tolerate 80 mg; but after my dosage was adjusted to 40 mg, I have done very well. I have pelvic/chest/abdominal CT, brain MRI, and bloodwork every three months. For the past three years, my report is “stable”, which is a great word for us cancer survivors. We thank God for Tagrisso and our outstanding doctors.
That’s great news ! I’ve been reading everyone’s comments and finally I read your on the 40mg pill successfully!!! …I’m having trouble tolerating the 80mg pill but have only been on it 3 weeks. …If my oncologist allows me to drop to the 40mg pill I’ll definitely share my results and experience…
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@1socalgal, I can imagine that you are concerned about the prolongation of QTc. Do you know about cardio-oncology?
Cardio-oncology offers expertise in addressing heart problems, potential or current issues during cancer treatments. At Mayo Clinic for example, the Cardio-Oncology Clinic (https://www.mayoclinic.org/departments-centers/cardio-oncology-clinic/overview/ovc-20442193) evaluates people prior to cancer treatment and patients who have experienced side effects due their treatment.
I'm glad that cardiology is now involved in monitoring your case. Sounds like it is not only concerning but also frustrating with no clear answers.
Cardio-oncology sounds perfect for me. Better yet: a cardiologist who specializes in the heart's electrical system. Keck Medical of USC has/had such a specialist who treated my husband, but I'm not at Keck. In any event my concern about my QTc has lessened since the Chief of Cardiology reviewed my ECGs and essentially said the QTc result calculated by the machine is only part of the story. He looked at the U-waves and said he didn't see a QTc problem. His analysis was sent to my oncologist, and now I'm wondering if he's going to re-evaluate the validity of the machine's calculations. Tagrisso is known to have heart-related side effects and when the ECG machine produces results that align with expectation, the conclusion is apparent. Or is it? The Chief of Cardiology ignored the Tagrisso connection and simply evaluated the ECG scans. If my next QTc results continue moving down, all of this may well be moot for me. But the question remains (at least in my head): what should oncologists make of the ECG results calculated by the machine?
@1soc1soc, I've been on Tagrisso for 3 and a half years now. My Oncologist has always said he plans to keep me on it "until the negative side effects become unbearable." Not being able to afford it is one of those negative effects. But the possibility of heart damage with long-term use is right up there. I pressed him for details and he said it can either be muscular or electrical degeneration. At first, I was getting MUGA scans every 3 months, along with my brain MRI, CAT scan, and bloodwork. In my case, he stopped my MUGA scans after 2 years because my ejection fraction actually went up; plus, I'm also seeing a Cardiologist who has taken over monitoring my heart.
I haven't seen a study linking Tagrisso to short-term heart problems, but there is a link, and everybody's body is different.
If you have the time to do your own research, you can join the International Association for the Study of Lung Cancer at iaslc.org. Check out 'Lung Cancer 360' for more information than any of us lay people could ever process! The field is advancing very rapidly. Best of luck to you.
Those are my symptoms too. I’ve been on 80mg for just three weeks and I’m very worried what it’s doing to the rest of my body…I see the oncologist next week for routine follow up. I hope I can get more of my life back
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1 ReactionHi @mollie2, I have experience with a different targeted therapy, for an ALK mutation, not EGFR. Targeted therapies can have life threatening side-effects and other debilitating side-effects. I've found that the debilitating side effects can sometimes lessen over time. For some people reducing a dose can be helpful, but still very effective. From the ALK perspective, a reduced dose is not uncommon at all, but there's not a lot of published research around this because the medications are relatively new when compared with traditional chemo, especially for early-stage lung cancers. The clinical trials for these meds often lock in a dose early in the trial, and the researchers don't have much chance to change it without starting over. The FDA is starting to make the process more flexible which will help with dose ranges for future medications.
You can't sustain being miserable for the next number of years. Hopefully your oncologist may have suggestions to deal with some of the side effects, and hopefully they are able to present you with options.
Have you had a chance to speak with your doctor about what you're experiencing?
Thank you very much ! I just started Tagrisso three weeks ago and have my first blood test and oncologist appointment follow up in one week. So I’m looking forward to the results and feedback. I’m hoping to try the 40mg pill and see if I feel better…I’m used to being active…BTW my original tumor was 3.2cm which barely puts me in the 1B category for further treatment…..Being very cautious to make a compromised choice going forward….again thanks !!
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Like -
Helpful -
Hug
1 ReactionI was under the impression that it's been established that Tagrisso and some other LC meds can have an impact on the heart. I've not seen a discussion of what the impact actually is, but in my case it appeared to be QTc - prolongation of the heart beat. Given how few responses there've been to my comments, I seem to be among a very very few who have any concerns about ECG results. Even then, upon review of my ECG scans, cardiology concluded that I don't actually have a QTc problem at all. Now that's the way to make your problems go away.
I'll check out iaslc.org. It's amazing what you can learn by poking around different sources. It was after such a poking around that I started taking my Tagrisso at night.
@1socalgal, mollie2, Have you joined the EGFR resistors group through FaceBook? We of course still want you to participate in Mayo Connect discussions, but this group may be helpful to you too, as it’s made up of other EGFR patients.
https://www.facebook.com/share/g4ocRdSZX4SQNMGy/
No I haven’t but I’ll check it out ..
That’s great news ! I’ve been reading everyone’s comments and finally I read your on the 40mg pill successfully!!! …I’m having trouble tolerating the 80mg pill but have only been on it 3 weeks. …If my oncologist allows me to drop to the 40mg pill I’ll definitely share my results and experience…
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