@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.
Northwest biotherapeutics is coming out with a vaccine for cancer right now. It’s approved in the UK. The FDA should be approving it Soon in the states, you should look it up.
Northwest biotherapeutics is coming out with a vaccine for cancer right now. It’s approved in the UK. The FDA should be approving it Soon in the states, you should look it up.
@babs1956, Go research!, Our lives depend on it.
There are many vaccines in trials right now, it's certainly an exciting time. Are you referring to DCVax? (https://nwbio.com/dcvax-technology/)
@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 know…I discovered I had a 3.2 cm nodule by chance. I had no symptoms. I’ve always been very healthy and rarely needed a doctor or took a pill other than Excedrin pm for sleeping. I’m now three weeks on 80mg Tagrisso and find it to be very strong and hard to live with…I’m hoping my oncologist will drop me to 40mg as long as it still gets the job done…Hang in there we can still have a quality life🙏🙏🙏🙏
I’ve been on it for a month and and I’ve been blessed to have other than diarrhea no side effects so I hope that they can get you down to 40 and you can feel comfortable.
I have always been very healthy. Take care of myself.
I had two girlfriends that decided to get a low-dose CT scam to check their hearts and I thought I want to do that so I go in and get it done my heart is great but I have a lung malignancy. I was shocked, what the heck so that was March 10 I’m on my third chemo right now.m while texting this and J have been on Tag for a month. I’m still trying to figure out how the hell I have lung cancer. I know the mutation and all that but still if my friends would not have shared with me and I would not have acted on it would’ve been stage four before I would’ve known.
I’ve been on it for a month and and I’ve been blessed to have other than diarrhea no side effects so I hope that they can get you down to 40 and you can feel comfortable.
I have always been very healthy. Take care of myself.
I had two girlfriends that decided to get a low-dose CT scam to check their hearts and I thought I want to do that so I go in and get it done my heart is great but I have a lung malignancy. I was shocked, what the heck so that was March 10 I’m on my third chemo right now.m while texting this and J have been on Tag for a month. I’m still trying to figure out how the hell I have lung cancer. I know the mutation and all that but still if my friends would not have shared with me and I would not have acted on it would’ve been stage four before I would’ve known.
I had a routine cardiac calcium score test and a very small sub 6m nodule was on the CT. I was slow to act because it was so small….When f finally went to a pulmonologist he order a full lung CT and a fairly large 3.2 cm lesion showed up. The supposed 6mm nodule didn’t even show up. So I had a lobectomy and now on tag. I too have lead a healthy active life and I’m still getting used to my new world. I am thankful I had the sense to follow up. I might not have 30 years ago. And for the doctors who performed their practices at a very high standard….
why are you starting radiation? just curious....without any radiation, my brain tumors shrank significantly on tagrisso alone. i did have 5 rounds of radiation back in november because small amounts of edema managed to envelop several of my brain tumors, thus rendering the tagrisso not working as effectively on those particular tumors. they were slowly growing because of the edema. apparently, tagrisso has a hard time crossing fluid. i put myself on a low dose of mag sulfate and seemingly have not had a problem since. don't really know if the mag sulfate is working or it's just plain ole luck that, so far, no edema has returned. teresa
I have another MRI as nd CT scan in the first week of June to see the changes the medication has made to my cells. The radiation oncologist felt radiation may not be needed from my frontal lobe as the osmertinib should take care of it. My lungs have a larger spot also my right hip, I’m to receive aggressive treatment for those areas.
My husband had Stage 2 EFGR NSLC RL upper lobectomy. He has had 2 rounds of chemo (badly tolerated) and his oncologist is planning Tagrisso next step. His coughing has increased since second chemo treatment. Nurse ordered steroid pack. Does this sound familiar to anyone?
My husband had Stage 2 EFGR NSLC RL upper lobectomy. He has had 2 rounds of chemo (badly tolerated) and his oncologist is planning Tagrisso next step. His coughing has increased since second chemo treatment. Nurse ordered steroid pack. Does this sound familiar to anyone?
@carrmb, I was diagnosed with Stage 2b NSLC w/ EGFR mutation in 2016. I had an upper right lobectomy followed by chemo and radiation at the same time. My Oncologist gave me steroid pills (Dexamethasone) to take twice a day the day before and after chemo. The first bag they hung during the chemo session was also Dex. You say his coughing has gotten worse, indicating he was coughing before. What's the source of his cough? Hopefully, the steroid pack is helping.
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Northwest biotherapeutics is coming out with a vaccine for cancer right now. It’s approved in the UK. The FDA should be approving it Soon in the states, you should look it up.
@babs1956, Go research!, Our lives depend on it.
There are many vaccines in trials right now, it's certainly an exciting time. Are you referring to DCVax? (https://nwbio.com/dcvax-technology/)
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1 ReactionI’m just shocked at how many people have this mutation it’s insane.
It’s always crazy to be diagnosed with lung cancer when it’s the last thing you ever thought you’d have.
I know…I discovered I had a 3.2 cm nodule by chance. I had no symptoms. I’ve always been very healthy and rarely needed a doctor or took a pill other than Excedrin pm for sleeping. I’m now three weeks on 80mg Tagrisso and find it to be very strong and hard to live with…I’m hoping my oncologist will drop me to 40mg as long as it still gets the job done…Hang in there we can still have a quality life🙏🙏🙏🙏
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1 ReactionI’ve been on it for a month and and I’ve been blessed to have other than diarrhea no side effects so I hope that they can get you down to 40 and you can feel comfortable.
I have always been very healthy. Take care of myself.
I had two girlfriends that decided to get a low-dose CT scam to check their hearts and I thought I want to do that so I go in and get it done my heart is great but I have a lung malignancy. I was shocked, what the heck so that was March 10 I’m on my third chemo right now.m while texting this and J have been on Tag for a month. I’m still trying to figure out how the hell I have lung cancer. I know the mutation and all that but still if my friends would not have shared with me and I would not have acted on it would’ve been stage four before I would’ve known.
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2 ReactionsI had a routine cardiac calcium score test and a very small sub 6m nodule was on the CT. I was slow to act because it was so small….When f finally went to a pulmonologist he order a full lung CT and a fairly large 3.2 cm lesion showed up. The supposed 6mm nodule didn’t even show up. So I had a lobectomy and now on tag. I too have lead a healthy active life and I’m still getting used to my new world. I am thankful I had the sense to follow up. I might not have 30 years ago. And for the doctors who performed their practices at a very high standard….
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Hug
2 ReactionsI have another MRI as nd CT scan in the first week of June to see the changes the medication has made to my cells. The radiation oncologist felt radiation may not be needed from my frontal lobe as the osmertinib should take care of it. My lungs have a larger spot also my right hip, I’m to receive aggressive treatment for those areas.
That’s what I had. 4 rounds of chemo over 12 weeks. Started Tagrisso about a month later. So far so good.
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1 ReactionMy husband had Stage 2 EFGR NSLC RL upper lobectomy. He has had 2 rounds of chemo (badly tolerated) and his oncologist is planning Tagrisso next step. His coughing has increased since second chemo treatment. Nurse ordered steroid pack. Does this sound familiar to anyone?
@carrmb, I was diagnosed with Stage 2b NSLC w/ EGFR mutation in 2016. I had an upper right lobectomy followed by chemo and radiation at the same time. My Oncologist gave me steroid pills (Dexamethasone) to take twice a day the day before and after chemo. The first bag they hung during the chemo session was also Dex. You say his coughing has gotten worse, indicating he was coughing before. What's the source of his cough? Hopefully, the steroid pack is helping.
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