@tedvoelker, I'm glad to hear your only side effect has been a rash. I'm curious. Why do you think your lack of energy is related to the lung cancer?
I was diagnosed at stage 2b with the EGFR Exon 19 mutation in June 2018. It metastasized to my brain in 2020, which is when I started Tagrisso. I had a recurrence in my brain in 2024, which we eliminated with one more round of radiation. To me, and others I know, one of the biggest challenges of advanced stage lung cancer while also being older is determining what is caused by cancer and what is caused by age, activity level, weight, etc.
Again, glad to hear you're mostly side effect free!
We share the same mutation Matthew. I also had a tumour in my left frontal lobe and a 4 cm hole in my right femur. The tumour in my right lung was near the top which has made breathing a little more challenging than prior to cancer. Needless to say I haven’t been as active as I was before being diagnosed with cancer. I had to be cautious about injury to my right femur. So my energy is either my medication or lack of activity. Glad to hear you continue your journey against cancer, take care.
I have been on it for 15 months and the only side effect has been a rash on my upper body. Energy level is lower but more likely linked to the lung cancer.
@tedvoelker, I'm glad to hear your only side effect has been a rash. I'm curious. Why do you think your lack of energy is related to the lung cancer?
I was diagnosed at stage 2b with the EGFR Exon 19 mutation in June 2018. It metastasized to my brain in 2020, which is when I started Tagrisso. I had a recurrence in my brain in 2024, which we eliminated with one more round of radiation. To me, and others I know, one of the biggest challenges of advanced stage lung cancer while also being older is determining what is caused by cancer and what is caused by age, activity level, weight, etc.
Again, glad to hear you're mostly side effect free!
I have been on it for 15 months and the only side effect has been a rash on my upper body. Energy level is lower but more likely linked to the lung cancer.
I have multifocal lung cancer (multiple primary nodules) and after two VAT surgeries I had SBRT for another 2 nodules and developed radiation-induced pneumonitis. I have pulmonary fibrosis as well and I know that immunotherapies are risky for pneumonitis but did not know about targeted therapy as well.
My lung cancer was caught quite early (from an X-ray of my elbow of all things). No symptoms at all. Partial lobectomy in February... started Tagrisso in March. I take it two hours after my evening meal. My side effects have been dryness in my nasal passages and face and intermittent diarrhea. I'm hopeful that with time the diarrhea will abate. Thankful for Imodium on those days when I'm traveling or away from facilities!
The steroid pack just finished and was extremely helpful. His appetite is coming back and his cough and energy level is improved. Tagrisso is approved for his EGFR marker following surgery and two rounds of chemo. His doctor is waiting for tests and improvement after chemo. He received the tagrisso pills and reviewed the side effects. He's scared. Any advice?
@carrmb, remember that the list of side effects has be incredibly exhaustive as we are one of the most litigious society's in the world. What's important are the side effects his oncologist tells him about. After all, every body is different.
Seems we all start with the diarrhea, but that passes (No pun intended.) after a few months. Skin rashes are somewhat common -- see a dermatologist. Nail splitting is corrected by Biotin - I take 20 mg/daily, but be sure to check with your oncologist before adding any meds. Overall, I and several people I know have been on Tagrisso for years with no or minimal recurrence. Have hope!
My husband has been on Tagrisso for a year, following RLL and two doses of chemo. His follow-up scans have been clear. He has been ER hospitalized three times. First with cellulitis in his foot and twice with bacterial infections in his right arm. First arm infection was a streptococcus bacterial infection in his blood on his right side of his body and 1 month later a bacterial infection in his right arm. All instances were treated with heavy duty antibiotics and hospital stays of 1-2 weeks. Had been receiving PT for lymphedemia in his arm and was improving when infection hit him again. Tagrisso was held and resumed by his oncologist until he recovered in all three instances. Scans are still clear. Has anyone else had blood infections while taking Tagrisso? Infectious disease doctors think it could be related to his lack of some lymph nodes on the underarm right side of his body following melanoma surgery 10 years ago.
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.
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it worked for 4 years for me.
We share the same mutation Matthew. I also had a tumour in my left frontal lobe and a 4 cm hole in my right femur. The tumour in my right lung was near the top which has made breathing a little more challenging than prior to cancer. Needless to say I haven’t been as active as I was before being diagnosed with cancer. I had to be cautious about injury to my right femur. So my energy is either my medication or lack of activity. Glad to hear you continue your journey against cancer, take care.
@tedvoelker, I'm glad to hear your only side effect has been a rash. I'm curious. Why do you think your lack of energy is related to the lung cancer?
I was diagnosed at stage 2b with the EGFR Exon 19 mutation in June 2018. It metastasized to my brain in 2020, which is when I started Tagrisso. I had a recurrence in my brain in 2024, which we eliminated with one more round of radiation. To me, and others I know, one of the biggest challenges of advanced stage lung cancer while also being older is determining what is caused by cancer and what is caused by age, activity level, weight, etc.
Again, glad to hear you're mostly side effect free!
I have been on it for 15 months and the only side effect has been a rash on my upper body. Energy level is lower but more likely linked to the lung cancer.
I have multifocal lung cancer (multiple primary nodules) and after two VAT surgeries I had SBRT for another 2 nodules and developed radiation-induced pneumonitis. I have pulmonary fibrosis as well and I know that immunotherapies are risky for pneumonitis but did not know about targeted therapy as well.
I was on it for 7 weeks and developed pneumonitis so I had to stop taking it. Praying my next scan is clear
My lung cancer was caught quite early (from an X-ray of my elbow of all things). No symptoms at all. Partial lobectomy in February... started Tagrisso in March. I take it two hours after my evening meal. My side effects have been dryness in my nasal passages and face and intermittent diarrhea. I'm hopeful that with time the diarrhea will abate. Thankful for Imodium on those days when I'm traveling or away from facilities!
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1 Reaction@carrmb, remember that the list of side effects has be incredibly exhaustive as we are one of the most litigious society's in the world. What's important are the side effects his oncologist tells him about. After all, every body is different.
Seems we all start with the diarrhea, but that passes (No pun intended.) after a few months. Skin rashes are somewhat common -- see a dermatologist. Nail splitting is corrected by Biotin - I take 20 mg/daily, but be sure to check with your oncologist before adding any meds. Overall, I and several people I know have been on Tagrisso for years with no or minimal recurrence. Have hope!
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Helpful -
Hug
4 ReactionsMy husband has been on Tagrisso for a year, following RLL and two doses of chemo. His follow-up scans have been clear. He has been ER hospitalized three times. First with cellulitis in his foot and twice with bacterial infections in his right arm. First arm infection was a streptococcus bacterial infection in his blood on his right side of his body and 1 month later a bacterial infection in his right arm. All instances were treated with heavy duty antibiotics and hospital stays of 1-2 weeks. Had been receiving PT for lymphedemia in his arm and was improving when infection hit him again. Tagrisso was held and resumed by his oncologist until he recovered in all three instances. Scans are still clear. Has anyone else had blood infections while taking Tagrisso? Infectious disease doctors think it could be related to his lack of some lymph nodes on the underarm right side of his body following melanoma surgery 10 years ago.
That would be wonderful, but I wonder if the oncologists are going to accept it. They may lose money. I wonder if they know about it I’m sure they do