Karen_L

You describe my experience to a T. My initial pneumonitis was probably a response to the radiation treatments. My extended, very serious bout was a result of the PDL-1 inhibitor, i.e., imfinzi (Durvalumab, in my case). I was pretty sick. I went as high as 80 mg. of prednisone for that. If I had not responded, I would have been admitted to the hospital for other treatments. Tapering from that high a dose was a bear & took forever. 
If you notice sleep disruption, take the steroid in the morning. If that doesn't help, get s sleep aid from the doc-- it was essential for me.  
The pain may actually be a result of the coughing. It's possible for people to cough so hard they break a rib. (This from my pulmonologist who I saw for asthma a zillion years ago.) But you must keep the pulmonologist up-to-date on the circumstances.
Do you have a pulse oximeter? Get one. If you notice increased shortness of breath, call the pulmonologist immediately with that info, plus the oximeter reading. I ended up with a pulmonary embolism during that exciting period of my treatment. Because it was at the time of a Covid surge-- ugh, National Guard in the ER-- I refused to go to the ER. That was supremely stupid on my part. As the pulmonologist said, very sternly,  "We've had a shot across the bow with this one." In other words, don't be a dope about your medical condition and follow directions, dammit. I am now a reformed and obedient patient. Mostly. 🤪
I wish you luck. Be vigilant and if you notice any change for the worse, or if you stop improving, you must call and ask about increasing the dose of the steroid. I'd call the pulmonologist. At the start of the worst of it, I asked mine to clarify who was my primary contact for the pneumonitis and he was very clear that he was. That helped streamline the care, I think. 
Good luck. Keep us posted. 
 

@KamotoIt’s nice to see you here, especially with the good news about Tagrisso. 

I second Marilyn-- you're not very far out from a big surgery and fatigue is surely at work in your situation. If you are "paying for" jogging, you might do well to let go of that for now and focus on walks. Research indicates that, counterintuitively, exercise actually can help us deal with fatigue, but it needs to be exercise appropriate to your circumstances and overall health. 
I was very active and physically fit before my dx. Circumstances had me on steroids for many months. Bless my pulmonologist -- he understood I would go crazy without some kind of exercise. Because I have always used a heart rate monitor with exercise, he gave me very specific heart rate parameters and released me to walk. I started by walking to the corner. That was a very big deal. The day I talked 2000 steps, I felt like I should get an Olympic medal. It's only gotten better from there-- I'm doing long bike rides again and seeing real progress in being able to manage hills. 
Try to take it easy on yourself. Recovery takes time....
And, welcome here!
 

No, no, no. It is NOT your last best hope. It's simply the treatment you're on right now, and the reactions your body is having to it. There are other things out there for treating your disease. You're just not in a place to be getting those yet, not until the pneumonitis is calmed down. (And, P.S., the docs may never be able to definitively say what caused it. The way I look at it is that some of us are just lucky.) (not)
I continue to feel like you and I are living parallel lives. I have coughed so much from post-nasal drip for the past five weeks that I have a significant case of almost-laryngitis. Currently am being treated for a sinus infection, which is helping a lot. I was advised to take Mucinex, which, to my surprise, has also helped a great deal. 
Now that I think of it, there's nothing that says you have to wait to seek a second opinion. (I mean, what else are you going to do while you try to ignore pain, stop coughing, and cope with having cancer?) You'll get through this. But if the coughing and pain continue, know that you deserve to feel better. I like Pstar's suggestion of consulting a palliative care team. That word, "palliative," has some negative connotations, but's not just for people who are dying, it's a support service for people in treatment who are experiencing pain and other issues. 
Take care. Keep us posted!

LilyMir,
Welcome to Team Tagrisso! I've been taking 80 mg./day since March. After a little nausea the first day or so, my side effects have been minimal: peeling skin on my fingers, more splitting nails than usual, a couple of mouth sores. Oh, and constipation. Like Judy, I am receiving regular heart checks. 
While I'm glad you've found the Tagrisso FB group, I've found it best for me to limit my time there. I've found the EGFR Resistors FB group more helpful to me.
I hope your Tagrisso providers instructed you to be sure to drink plenty of water-- I was told 64 oz.per day. Also I hope that the pharmacy specialists checked Tag against your other medications to rule out negative interactions.
As to weight gain.... I gained 30 lbs while on high-dose steroids. Urg. Once things settle down for you, I bet you'll be able to give more attention to other areas of your life, like losing weight. Try not to worry.
 
 

Wow, this is a happy ending times one billion. Congrats!

No, no, no. It is NOT your last best hope. It's simply the treatment you're on right now, and the reactions your body is having to it. There are other things out there for treating your disease. You're just not in a place to be getting those yet, not until the pneumonitis is calmed down. (And, P.S., the docs may never be able to definitively say what caused it. The way I look at it is that some of us are just lucky.) (not)
I continue to feel like you and I are living parallel lives. I have coughed so much from post-nasal drip for the past five weeks that I have a significant case of almost-laryngitis. Currently am being treated for a sinus infection, which is helping a lot. I was advised to take Mucinex, which, to my surprise, has also helped a great deal. 
Now that I think of it, there's nothing that says you have to wait to seek a second opinion. (I mean, what else are you going to do while you try to ignore pain, stop coughing, and cope with having cancer?) You'll get through this. But if the coughing and pain continue, know that you deserve to feel better. I like Pstar's suggestion of consulting a palliative care team. That word, "palliative," has some negative connotations, but's not just for people who are dying, it's a support service for people in treatment who are experiencing pain and other issues. 
Take care. Keep us posted!

You describe my experience to a T. My initial pneumonitis was probably a response to the radiation treatments. My extended, very serious bout was a result of the PDL-1 inhibitor, i.e., imfinzi (Durvalumab, in my case). I was pretty sick. I went as high as 80 mg. of prednisone for that. If I had not responded, I would have been admitted to the hospital for other treatments. Tapering from that high a dose was a bear & took forever. 
If you notice sleep disruption, take the steroid in the morning. If that doesn't help, get s sleep aid from the doc-- it was essential for me.  
The pain may actually be a result of the coughing. It's possible for people to cough so hard they break a rib. (This from my pulmonologist who I saw for asthma a zillion years ago.) But you must keep the pulmonologist up-to-date on the circumstances.
Do you have a pulse oximeter? Get one. If you notice increased shortness of breath, call the pulmonologist immediately with that info, plus the oximeter reading. I ended up with a pulmonary embolism during that exciting period of my treatment. Because it was at the time of a Covid surge-- ugh, National Guard in the ER-- I refused to go to the ER. That was supremely stupid on my part. As the pulmonologist said, very sternly,  "We've had a shot across the bow with this one." In other words, don't be a dope about your medical condition and follow directions, dammit. I am now a reformed and obedient patient. Mostly. 🤪
I wish you luck. Be vigilant and if you notice any change for the worse, or if you stop improving, you must call and ask about increasing the dose of the steroid. I'd call the pulmonologist. At the start of the worst of it, I asked mine to clarify who was my primary contact for the pneumonitis and he was very clear that he was. That helped streamline the care, I think. 
Good luck. Keep us posted. 
 

Hi cbert,
I had life-threatening pneumonitis and was treated with high-dose steroids for many months. The amount of steroids prescribed depends on the patient and their circumstances. If the situation doesn't resolve with steroids, there are other meds that can be used.
You don't say why you're asking; I hope if you are asking for yourself, you are seeing a pulmonologist. Pneumonitis can be very serious. 
Karen

Hi Rosie! Welcome to one of the best lung cancer forums on the web. I, too, had no risk factors, never smoked, etc. Who knows what happened. What matters is today.
You'll find that there's a lot to learn on this little lung cancer road we're on and that learning becomes easier as you grow more accustomed to having a lung cancer diagnosis. I know I was in shock for a long time. Learning helped me feel like I had at least a little grasp on what was happening. 
I want to join my voice to the queries about biomarker testing. The immunotherapies you're being treated with are specifically for patients who are "positive for PD-L1, but do not have an abnormal EGFR or ALK gene." Do you know what your biomarkers are? You might find this information about biomarkers useful.

Thanks for this, Judy. I love David Carbone. 

Just today I picked up an article about impacts of Covid on the brain. “One of Long Covid’s “Worst Symptoms Is Also Its Most Misunderstood” is about so-called “brain fog.” It’s sobering. From the article: 
A neuro-oncologist at Stanford thinks Covid damages the brain without infecting it directly. She and her team showed that “when mice experience mild bouts of COVID, inflammatory chemicals can travel from the lungs to the brain.”
 
We all know how much lung cancer likes the brain…the parallels between brain mets and Covid are interesting. 
I can’t begin to imagine the long term damage Covid does to the lungs. I do not need to be coping with anything more than lung cancer. No concerts for me, for sure!
https://www.theatlantic.com/health/archive/2022/09/long-covid-brain-fog-symptom-executive-function/671393/
 
 

Wow, this is a happy ending times one billion. Congrats!

You describe my experience to a T. My initial pneumonitis was probably a response to the radiation treatments. My extended, very serious bout was a result of the PDL-1 inhibitor, i.e., imfinzi (Durvalumab, in my case). I was pretty sick. I went as high as 80 mg. of prednisone for that. If I had not responded, I would have been admitted to the hospital for other treatments. Tapering from that high a dose was a bear & took forever. 
If you notice sleep disruption, take the steroid in the morning. If that doesn't help, get s sleep aid from the doc-- it was essential for me.  
The pain may actually be a result of the coughing. It's possible for people to cough so hard they break a rib. (This from my pulmonologist who I saw for asthma a zillion years ago.) But you must keep the pulmonologist up-to-date on the circumstances.
Do you have a pulse oximeter? Get one. If you notice increased shortness of breath, call the pulmonologist immediately with that info, plus the oximeter reading. I ended up with a pulmonary embolism during that exciting period of my treatment. Because it was at the time of a Covid surge-- ugh, National Guard in the ER-- I refused to go to the ER. That was supremely stupid on my part. As the pulmonologist said, very sternly,  "We've had a shot across the bow with this one." In other words, don't be a dope about your medical condition and follow directions, dammit. I am now a reformed and obedient patient. Mostly. 🤪
I wish you luck. Be vigilant and if you notice any change for the worse, or if you stop improving, you must call and ask about increasing the dose of the steroid. I'd call the pulmonologist. At the start of the worst of it, I asked mine to clarify who was my primary contact for the pneumonitis and he was very clear that he was. That helped streamline the care, I think. 
Good luck. Keep us posted. 
 

Wow, this is a happy ending times one billion. Congrats!

Wow, this is a happy ending times one billion. Congrats!

You describe my experience to a T. My initial pneumonitis was probably a response to the radiation treatments. My extended, very serious bout was a result of the PDL-1 inhibitor, i.e., imfinzi (Durvalumab, in my case). I was pretty sick. I went as high as 80 mg. of prednisone for that. If I had not responded, I would have been admitted to the hospital for other treatments. Tapering from that high a dose was a bear & took forever. 
If you notice sleep disruption, take the steroid in the morning. If that doesn't help, get s sleep aid from the doc-- it was essential for me.  
The pain may actually be a result of the coughing. It's possible for people to cough so hard they break a rib. (This from my pulmonologist who I saw for asthma a zillion years ago.) But you must keep the pulmonologist up-to-date on the circumstances.
Do you have a pulse oximeter? Get one. If you notice increased shortness of breath, call the pulmonologist immediately with that info, plus the oximeter reading. I ended up with a pulmonary embolism during that exciting period of my treatment. Because it was at the time of a Covid surge-- ugh, National Guard in the ER-- I refused to go to the ER. That was supremely stupid on my part. As the pulmonologist said, very sternly,  "We've had a shot across the bow with this one." In other words, don't be a dope about your medical condition and follow directions, dammit. I am now a reformed and obedient patient. Mostly. 🤪
I wish you luck. Be vigilant and if you notice any change for the worse, or if you stop improving, you must call and ask about increasing the dose of the steroid. I'd call the pulmonologist. At the start of the worst of it, I asked mine to clarify who was my primary contact for the pneumonitis and he was very clear that he was. That helped streamline the care, I think. 
Good luck. Keep us posted. 
 

Hi Rosie! Welcome to one of the best lung cancer forums on the web. I, too, had no risk factors, never smoked, etc. Who knows what happened. What matters is today.
You'll find that there's a lot to learn on this little lung cancer road we're on and that learning becomes easier as you grow more accustomed to having a lung cancer diagnosis. I know I was in shock for a long time. Learning helped me feel like I had at least a little grasp on what was happening. 
I want to join my voice to the queries about biomarker testing. The immunotherapies you're being treated with are specifically for patients who are "positive for PD-L1, but do not have an abnormal EGFR or ALK gene." Do you know what your biomarkers are? You might find this information about biomarkers useful.

Hi cbert,
I had life-threatening pneumonitis and was treated with high-dose steroids for many months. The amount of steroids prescribed depends on the patient and their circumstances. If the situation doesn't resolve with steroids, there are other meds that can be used.
You don't say why you're asking; I hope if you are asking for yourself, you are seeing a pulmonologist. Pneumonitis can be very serious. 
Karen

Just today I picked up an article about impacts of Covid on the brain. “One of Long Covid’s “Worst Symptoms Is Also Its Most Misunderstood” is about so-called “brain fog.” It’s sobering. From the article: 
A neuro-oncologist at Stanford thinks Covid damages the brain without infecting it directly. She and her team showed that “when mice experience mild bouts of COVID, inflammatory chemicals can travel from the lungs to the brain.”
 
We all know how much lung cancer likes the brain…the parallels between brain mets and Covid are interesting. 
I can’t begin to imagine the long term damage Covid does to the lungs. I do not need to be coping with anything more than lung cancer. No concerts for me, for sure!
https://www.theatlantic.com/health/archive/2022/09/long-covid-brain-fog-symptom-executive-function/671393/
 
 

Just today I picked up an article about impacts of Covid on the brain. “One of Long Covid’s “Worst Symptoms Is Also Its Most Misunderstood” is about so-called “brain fog.” It’s sobering. From the article: 
A neuro-oncologist at Stanford thinks Covid damages the brain without infecting it directly. She and her team showed that “when mice experience mild bouts of COVID, inflammatory chemicals can travel from the lungs to the brain.”
 
We all know how much lung cancer likes the brain…the parallels between brain mets and Covid are interesting. 
I can’t begin to imagine the long term damage Covid does to the lungs. I do not need to be coping with anything more than lung cancer. No concerts for me, for sure!
https://www.theatlantic.com/health/archive/2022/09/long-covid-brain-fog-symptom-executive-function/671393/
 
 

Just today I picked up an article about impacts of Covid on the brain. “One of Long Covid’s “Worst Symptoms Is Also Its Most Misunderstood” is about so-called “brain fog.” It’s sobering. From the article: 
A neuro-oncologist at Stanford thinks Covid damages the brain without infecting it directly. She and her team showed that “when mice experience mild bouts of COVID, inflammatory chemicals can travel from the lungs to the brain.”
 
We all know how much lung cancer likes the brain…the parallels between brain mets and Covid are interesting. 
I can’t begin to imagine the long term damage Covid does to the lungs. I do not need to be coping with anything more than lung cancer. No concerts for me, for sure!
https://www.theatlantic.com/health/archive/2022/09/long-covid-brain-fog-symptom-executive-function/671393/
 
 

Just today I picked up an article about impacts of Covid on the brain. “One of Long Covid’s “Worst Symptoms Is Also Its Most Misunderstood” is about so-called “brain fog.” It’s sobering. From the article: 
A neuro-oncologist at Stanford thinks Covid damages the brain without infecting it directly. She and her team showed that “when mice experience mild bouts of COVID, inflammatory chemicals can travel from the lungs to the brain.”
 
We all know how much lung cancer likes the brain…the parallels between brain mets and Covid are interesting. 
I can’t begin to imagine the long term damage Covid does to the lungs. I do not need to be coping with anything more than lung cancer. No concerts for me, for sure!
https://www.theatlantic.com/health/archive/2022/09/long-covid-brain-fog-symptom-executive-function/671393/
 
 

Yep, no concerts for me this season either!

Hi Rosie! Welcome to one of the best lung cancer forums on the web. I, too, had no risk factors, never smoked, etc. Who knows what happened. What matters is today.
You'll find that there's a lot to learn on this little lung cancer road we're on and that learning becomes easier as you grow more accustomed to having a lung cancer diagnosis. I know I was in shock for a long time. Learning helped me feel like I had at least a little grasp on what was happening. 
I want to join my voice to the queries about biomarker testing. The immunotherapies you're being treated with are specifically for patients who are "positive for PD-L1, but do not have an abnormal EGFR or ALK gene." Do you know what your biomarkers are? You might find this information about biomarkers useful.