Teresa, my husband is also on Tagrisso and the fear of course is that it will stop working. Are you able to say any more about that clinical trial using a drug that will target all the proteins?
Also, what are your Tagrisso side effects? My husband just started Tagrisso and is sleeping a lot, seems to tire easily and his chest is tight.
Best of luck with everything and let’s hope the drug you are talking about will be available soon!!
my oncologist informed me that there are original tagrisso trial participants that are still on tagrisso 8 years down the road. i will assume these people are overall healthy. i was healthy with no health problems and/or co-morbidities when i was diagnosed. since then, i have completely stopped drinking alcohol and always make sure i am eating very healthy. my oncologist used to be pessimistic and/or never said much in terms of my treatment. now he is way more optimistic than i actually am. the clinical trial that is ongoing may be only in phase 2 trial, but it will target all mutations along the egfr protein line. i am l858r. tagrisso was the first drug to completely cross the blood brain barrier and target the t790m mutation. this new drug will be a complete game changer because of it's ability to target all mutations along the egfr line. also, when i first started tagrisso, i was also tiring easily and exhibiting chest tightness due to my erratic heart rates. i have had numerous ekgs and a 48 hour holter monitor showed no arrthythmias. i still to this day occasionally, and for no apparent reason, my heart rate can shoot to the 140 range at the drop of a hat lasting only around a minute or two then immediately fall back to the 70s range. i use a pulse oximeter to measure the rapid rise and fall of my heart rates. i just recently had a severe bout of digestive issues, which i am attributing to possible long term tagrisso. next week i am going in for my chest ct, but a abdominal series was added with barium to rule out anything that could possibly be suspicious. do not worry that the tagrisso will stop working. sounds like your husband is going through the 'normal' process and side effects of tagrisso. one only hopes that the side effects are not severe enough to warrant removal from this drug. i started on a clinical trial and was in the control arm 'tagrisso only' participant with the addition of avastin being the other arm. so i have only known tagrisso since being diagnosed. i never had traditional chemotherapy. of course, my immune system is shot, just like traditional chemo, but i wear masks in any social situations and am as careful as humanly possible in order to not get sick. teresa
Teresa, I am so glad to hear that you are doing well and am hoping that all goes well with your ct's next week. Do you have the name for the clinical trial you are talking about that targets all of the egfr proteins? I would love to look it up and read more about it. Thank you so much for your encouragement,
Fraser
I’m in my second month, diagnosed with stage 4 non small cell lung cancer that metastasized into my hip, femoral bone and left frontal lobe. Treatment has been going well with little side effects. Start radiation in July, I feel grateful we have this as an option and not needing to be on IV.
my oncologist informed me that there are original tagrisso trial participants that are still on tagrisso 8 years down the road. i will assume these people are overall healthy. i was healthy with no health problems and/or co-morbidities when i was diagnosed. since then, i have completely stopped drinking alcohol and always make sure i am eating very healthy. my oncologist used to be pessimistic and/or never said much in terms of my treatment. now he is way more optimistic than i actually am. the clinical trial that is ongoing may be only in phase 2 trial, but it will target all mutations along the egfr protein line. i am l858r. tagrisso was the first drug to completely cross the blood brain barrier and target the t790m mutation. this new drug will be a complete game changer because of it's ability to target all mutations along the egfr line. also, when i first started tagrisso, i was also tiring easily and exhibiting chest tightness due to my erratic heart rates. i have had numerous ekgs and a 48 hour holter monitor showed no arrthythmias. i still to this day occasionally, and for no apparent reason, my heart rate can shoot to the 140 range at the drop of a hat lasting only around a minute or two then immediately fall back to the 70s range. i use a pulse oximeter to measure the rapid rise and fall of my heart rates. i just recently had a severe bout of digestive issues, which i am attributing to possible long term tagrisso. next week i am going in for my chest ct, but a abdominal series was added with barium to rule out anything that could possibly be suspicious. do not worry that the tagrisso will stop working. sounds like your husband is going through the 'normal' process and side effects of tagrisso. one only hopes that the side effects are not severe enough to warrant removal from this drug. i started on a clinical trial and was in the control arm 'tagrisso only' participant with the addition of avastin being the other arm. so i have only known tagrisso since being diagnosed. i never had traditional chemotherapy. of course, my immune system is shot, just like traditional chemo, but i wear masks in any social situations and am as careful as humanly possible in order to not get sick. teresa
Glad to hear you are doing so well! I know 2 men who have been on Tagrisso for over 7 years and are doing fine. I just saw one of them last night at GO2's monthly "Raising Hope" Zoom call and he is energetic and still helping the newly diagnosed.
My story indicates we need to be careful about blaming Tagrisso for all our other problems. Tagrisso only makes us mildly immune-suppressed, which, nonetheless, makes us susceptible to digestive issues. However, once my Oncologist sent me to a Gastroenterologist, he found that my reflux was caused by Barrett's Syndrome and my bowel problems were caused by microscopic colitis. I was on a corticosteroid for a couple of months that cleared up the colitis, and I still start each day with prescription-strength Nexium, which has cured my stomach problems.
In the past, I thought my restless leg syndrome might have been due to Tagrisso, but it turned out that I had low iron levels as a result of taking Nexium! I had a couple of injections over a year ago, and my iron levels are still good.
In short, bring these problems up with your primary care physician and Oncologist, as they may have ideas that can help you. I'm lucky in that, in my case, these two doctors know each other and share opinions before telling me what to do. I hope you and I and others also make it 8 years and beyond!
I’m in my second month, diagnosed with stage 4 non small cell lung cancer that metastasized into my hip, femoral bone and left frontal lobe. Treatment has been going well with little side effects. Start radiation in July, I feel grateful we have this as an option and not needing to be on IV.
Welcome to Mayo Connect @tedvoelker. I'm glad to hear that you are tolerating the treatment with minimal issues. I have a different mutation, ALK, so I've been taking a different targeted therapy drug for 4 years. Sometimes I feel that I got off easy, without having to endure a traditional chemotherapy, but then I'm reminded that I am stage IV and may have to face it in the future. We'll take each day that we get, especially when we're able to live relatively 'normal' lives. You're early in this process, the weight of the diagnosis does get easier over time. Don't be afraid to ask for help.
Glad to hear you are doing so well! I know 2 men who have been on Tagrisso for over 7 years and are doing fine. I just saw one of them last night at GO2's monthly "Raising Hope" Zoom call and he is energetic and still helping the newly diagnosed.
My story indicates we need to be careful about blaming Tagrisso for all our other problems. Tagrisso only makes us mildly immune-suppressed, which, nonetheless, makes us susceptible to digestive issues. However, once my Oncologist sent me to a Gastroenterologist, he found that my reflux was caused by Barrett's Syndrome and my bowel problems were caused by microscopic colitis. I was on a corticosteroid for a couple of months that cleared up the colitis, and I still start each day with prescription-strength Nexium, which has cured my stomach problems.
In the past, I thought my restless leg syndrome might have been due to Tagrisso, but it turned out that I had low iron levels as a result of taking Nexium! I had a couple of injections over a year ago, and my iron levels are still good.
In short, bring these problems up with your primary care physician and Oncologist, as they may have ideas that can help you. I'm lucky in that, in my case, these two doctors know each other and share opinions before telling me what to do. I hope you and I and others also make it 8 years and beyond!
yeah!! i am so glad to hear others are doing so well on tagrisso also. i almost thought i was in a very small minority. i am having a cat scan of my abdomen with barium tomorrow. you are right, i shouldn't blame every symptom on tagrisso, but there is really no way of knowing what long term effects tagrisso may have on those who have been on this medication for over a year. what i am finding is that side effects differ for everyone taking it. new side effects pop up with people newly starting on tagrisso. accelerating heart rates wasn't one of those side effects at the time my symptoms came into play after being on tagrisso for a couple of months. it is not listed as a common side effect, but is now listed as a rare side effect. if my barium scan comes out clean, the only thing to blame would be the tagrisso. i have not had any symptoms since cutting my 80mg in half for a few days and starting on prilosec. i have had just about every lab test imaginable, which all come out clean except for a critical or almost critical level neutrophil count, that is definitely caused by the tagrisso. be thankful if your immune system isn't completely or almost completely shot like mine is. for the most part, i have somewhat become a social hermit or always masking up because i do not want to become sick. one bout of covid sent me packing to the emergency room when i experienced pressure behind my right eye and the thought of brain edema was a real threat. everything was clean on the scan, but still scarred me for life. i was a registered nurse for 30 years. my oncologist is definitely a keeper because he is now attending lung cancer seminars and conventions in order to learn as much as he can, but there are still times i am making the suggestions on what needs to be done. we will make it to 8 years and beyond. there will be even a better drug on the market or even a cure by then. i was told that if i would have come to the oncologists 5 years prior when i was diagnosed, they would have given me six months to live. i was preparing myself for dying until the craniotomy basically saved my life in more ways then one. teresa
I’m in my second month, diagnosed with stage 4 non small cell lung cancer that metastasized into my hip, femoral bone and left frontal lobe. Treatment has been going well with little side effects. Start radiation in July, I feel grateful we have this as an option and not needing to be on IV.
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
Teresa, I am so glad to hear that you are doing well and am hoping that all goes well with your ct's next week. Do you have the name for the clinical trial you are talking about that targets all of the egfr proteins? I would love to look it up and read more about it. Thank you so much for your encouragement,
Fraser
that i do not know. my oncologist may have gotten this information by attending a world lung cancer conference in singapore last year. china may be the ones conducting the clinical trial because they are the world leaders in nsclc advancements in treatments. he only told me that a new drug is in clinical trial that will target all egfr proteins. the drug company may be called 'black diamond' because my partner has done a lot of research into the next generation of egfr targeted therapies. 'black diamond' seemingly stands alone in the advancement of this type of targeted therapy that will target all egfr proteins. this is becoming a race for a cure. whoever wins, conquers the cancer world for whatever specific type of cancer and the payoffs and profits would be enormous. teresa
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?
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my oncologist informed me that there are original tagrisso trial participants that are still on tagrisso 8 years down the road. i will assume these people are overall healthy. i was healthy with no health problems and/or co-morbidities when i was diagnosed. since then, i have completely stopped drinking alcohol and always make sure i am eating very healthy. my oncologist used to be pessimistic and/or never said much in terms of my treatment. now he is way more optimistic than i actually am. the clinical trial that is ongoing may be only in phase 2 trial, but it will target all mutations along the egfr protein line. i am l858r. tagrisso was the first drug to completely cross the blood brain barrier and target the t790m mutation. this new drug will be a complete game changer because of it's ability to target all mutations along the egfr line. also, when i first started tagrisso, i was also tiring easily and exhibiting chest tightness due to my erratic heart rates. i have had numerous ekgs and a 48 hour holter monitor showed no arrthythmias. i still to this day occasionally, and for no apparent reason, my heart rate can shoot to the 140 range at the drop of a hat lasting only around a minute or two then immediately fall back to the 70s range. i use a pulse oximeter to measure the rapid rise and fall of my heart rates. i just recently had a severe bout of digestive issues, which i am attributing to possible long term tagrisso. next week i am going in for my chest ct, but a abdominal series was added with barium to rule out anything that could possibly be suspicious. do not worry that the tagrisso will stop working. sounds like your husband is going through the 'normal' process and side effects of tagrisso. one only hopes that the side effects are not severe enough to warrant removal from this drug. i started on a clinical trial and was in the control arm 'tagrisso only' participant with the addition of avastin being the other arm. so i have only known tagrisso since being diagnosed. i never had traditional chemotherapy. of course, my immune system is shot, just like traditional chemo, but i wear masks in any social situations and am as careful as humanly possible in order to not get sick. teresa
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3 ReactionsTeresa, I am so glad to hear that you are doing well and am hoping that all goes well with your ct's next week. Do you have the name for the clinical trial you are talking about that targets all of the egfr proteins? I would love to look it up and read more about it. Thank you so much for your encouragement,
Fraser
I’m in my second month, diagnosed with stage 4 non small cell lung cancer that metastasized into my hip, femoral bone and left frontal lobe. Treatment has been going well with little side effects. Start radiation in July, I feel grateful we have this as an option and not needing to be on IV.
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Helpful -
Hug
1 ReactionGlad to hear you are doing so well! I know 2 men who have been on Tagrisso for over 7 years and are doing fine. I just saw one of them last night at GO2's monthly "Raising Hope" Zoom call and he is energetic and still helping the newly diagnosed.
My story indicates we need to be careful about blaming Tagrisso for all our other problems. Tagrisso only makes us mildly immune-suppressed, which, nonetheless, makes us susceptible to digestive issues. However, once my Oncologist sent me to a Gastroenterologist, he found that my reflux was caused by Barrett's Syndrome and my bowel problems were caused by microscopic colitis. I was on a corticosteroid for a couple of months that cleared up the colitis, and I still start each day with prescription-strength Nexium, which has cured my stomach problems.
In the past, I thought my restless leg syndrome might have been due to Tagrisso, but it turned out that I had low iron levels as a result of taking Nexium! I had a couple of injections over a year ago, and my iron levels are still good.
In short, bring these problems up with your primary care physician and Oncologist, as they may have ideas that can help you. I'm lucky in that, in my case, these two doctors know each other and share opinions before telling me what to do. I hope you and I and others also make it 8 years and beyond!
Welcome to Mayo Connect @tedvoelker. I'm glad to hear that you are tolerating the treatment with minimal issues. I have a different mutation, ALK, so I've been taking a different targeted therapy drug for 4 years. Sometimes I feel that I got off easy, without having to endure a traditional chemotherapy, but then I'm reminded that I am stage IV and may have to face it in the future. We'll take each day that we get, especially when we're able to live relatively 'normal' lives. You're early in this process, the weight of the diagnosis does get easier over time. Don't be afraid to ask for help.
yeah!! i am so glad to hear others are doing so well on tagrisso also. i almost thought i was in a very small minority. i am having a cat scan of my abdomen with barium tomorrow. you are right, i shouldn't blame every symptom on tagrisso, but there is really no way of knowing what long term effects tagrisso may have on those who have been on this medication for over a year. what i am finding is that side effects differ for everyone taking it. new side effects pop up with people newly starting on tagrisso. accelerating heart rates wasn't one of those side effects at the time my symptoms came into play after being on tagrisso for a couple of months. it is not listed as a common side effect, but is now listed as a rare side effect. if my barium scan comes out clean, the only thing to blame would be the tagrisso. i have not had any symptoms since cutting my 80mg in half for a few days and starting on prilosec. i have had just about every lab test imaginable, which all come out clean except for a critical or almost critical level neutrophil count, that is definitely caused by the tagrisso. be thankful if your immune system isn't completely or almost completely shot like mine is. for the most part, i have somewhat become a social hermit or always masking up because i do not want to become sick. one bout of covid sent me packing to the emergency room when i experienced pressure behind my right eye and the thought of brain edema was a real threat. everything was clean on the scan, but still scarred me for life. i was a registered nurse for 30 years. my oncologist is definitely a keeper because he is now attending lung cancer seminars and conventions in order to learn as much as he can, but there are still times i am making the suggestions on what needs to be done. we will make it to 8 years and beyond. there will be even a better drug on the market or even a cure by then. i was told that if i would have come to the oncologists 5 years prior when i was diagnosed, they would have given me six months to live. i was preparing myself for dying until the craniotomy basically saved my life in more ways then one. teresa
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
that i do not know. my oncologist may have gotten this information by attending a world lung cancer conference in singapore last year. china may be the ones conducting the clinical trial because they are the world leaders in nsclc advancements in treatments. he only told me that a new drug is in clinical trial that will target all egfr proteins. the drug company may be called 'black diamond' because my partner has done a lot of research into the next generation of egfr targeted therapies. 'black diamond' seemingly stands alone in the advancement of this type of targeted therapy that will target all egfr proteins. this is becoming a race for a cure. whoever wins, conquers the cancer world for whatever specific type of cancer and the payoffs and profits would be enormous. teresa
Yes. Stage 3 lung cancer. Took Tagrisso for 7 months & now I am in remission.
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?