Karen_L

I had my 3-month MRI this past Monday and saw the onc. radiologist today. There's nothing new to report-- YAY! The ring around the lesion they zapped is fading & breaking up. The little spots they are watching are so small they have a hard time finding them, but the head of the gamma knife program and my radiologist think they're probably just blood vessels. 
My pulse ox was 99! 
The conversation with her is always interesting. She says I've had a superb response to chemo rads and immunotherapy. But, I said, I had barely 25% of the protocol treatment for immunotherapy (Pacific Study.) She said they aren't terribly clear about how much immunotherapy it really takes to jumpstart the immune system. And, she also said she suspected the brain had already been seeded prior to any treatment. But, I said, it's my understanding that EGFR mutated lung cancer doesn't respond to immunotherapy. No, she said, according to Pacific Study treatment protocols, EGFR-positive patients had no difference in response than patients with non-EGFR mutated lung cancers. Which doesn't give you a complete picture because she didn't put her statement in context of total results, but it sounds nice. 
She also took a look at my most recent CT scans of the lungs The only thing to see is ongoing scarring from treatment and pneumonitis, and that may disappear or maybe it won't. 
Pretty amazing, right? I am feeling very, very grateful. 
 
 

I experience both. Re: dry mouth, I try to drink more water-- I find it helps to have a really big bottle, about 48 oz., that I fill in the morning and then use all day. My aim is 1.5 of those big guys, plus random beverages along the way. 
In terms of the nose, I use a gentle saline nasal wash my primary care doc recommended. It seems to help. 

I had my 3-month MRI this past Monday and saw the onc. radiologist today. There's nothing new to report-- YAY! The ring around the lesion they zapped is fading & breaking up. The little spots they are watching are so small they have a hard time finding them, but the head of the gamma knife program and my radiologist think they're probably just blood vessels. 
My pulse ox was 99! 
The conversation with her is always interesting. She says I've had a superb response to chemo rads and immunotherapy. But, I said, I had barely 25% of the protocol treatment for immunotherapy (Pacific Study.) She said they aren't terribly clear about how much immunotherapy it really takes to jumpstart the immune system. And, she also said she suspected the brain had already been seeded prior to any treatment. But, I said, it's my understanding that EGFR mutated lung cancer doesn't respond to immunotherapy. No, she said, according to Pacific Study treatment protocols, EGFR-positive patients had no difference in response than patients with non-EGFR mutated lung cancers. Which doesn't give you a complete picture because she didn't put her statement in context of total results, but it sounds nice. 
She also took a look at my most recent CT scans of the lungs The only thing to see is ongoing scarring from treatment and pneumonitis, and that may disappear or maybe it won't. 
Pretty amazing, right? I am feeling very, very grateful. 
 
 

I had my 3-month MRI this past Monday and saw the onc. radiologist today. There's nothing new to report-- YAY! The ring around the lesion they zapped is fading & breaking up. The little spots they are watching are so small they have a hard time finding them, but the head of the gamma knife program and my radiologist think they're probably just blood vessels. 
My pulse ox was 99! 
The conversation with her is always interesting. She says I've had a superb response to chemo rads and immunotherapy. But, I said, I had barely 25% of the protocol treatment for immunotherapy (Pacific Study.) She said they aren't terribly clear about how much immunotherapy it really takes to jumpstart the immune system. And, she also said she suspected the brain had already been seeded prior to any treatment. But, I said, it's my understanding that EGFR mutated lung cancer doesn't respond to immunotherapy. No, she said, according to Pacific Study treatment protocols, EGFR-positive patients had no difference in response than patients with non-EGFR mutated lung cancers. Which doesn't give you a complete picture because she didn't put her statement in context of total results, but it sounds nice. 
She also took a look at my most recent CT scans of the lungs The only thing to see is ongoing scarring from treatment and pneumonitis, and that may disappear or maybe it won't. 
Pretty amazing, right? I am feeling very, very grateful. 
 
 

I had my 3-month MRI this past Monday and saw the onc. radiologist today. There's nothing new to report-- YAY! The ring around the lesion they zapped is fading & breaking up. The little spots they are watching are so small they have a hard time finding them, but the head of the gamma knife program and my radiologist think they're probably just blood vessels. 
My pulse ox was 99! 
The conversation with her is always interesting. She says I've had a superb response to chemo rads and immunotherapy. But, I said, I had barely 25% of the protocol treatment for immunotherapy (Pacific Study.) She said they aren't terribly clear about how much immunotherapy it really takes to jumpstart the immune system. And, she also said she suspected the brain had already been seeded prior to any treatment. But, I said, it's my understanding that EGFR mutated lung cancer doesn't respond to immunotherapy. No, she said, according to Pacific Study treatment protocols, EGFR-positive patients had no difference in response than patients with non-EGFR mutated lung cancers. Which doesn't give you a complete picture because she didn't put her statement in context of total results, but it sounds nice. 
She also took a look at my most recent CT scans of the lungs The only thing to see is ongoing scarring from treatment and pneumonitis, and that may disappear or maybe it won't. 
Pretty amazing, right? I am feeling very, very grateful. 
 
 

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

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.
 
 

I experience both. Re: dry mouth, I try to drink more water-- I find it helps to have a really big bottle, about 48 oz., that I fill in the morning and then use all day. My aim is 1.5 of those big guys, plus random beverages along the way. 
In terms of the nose, I use a gentle saline nasal wash my primary care doc recommended. It seems to help. 

I experience both. Re: dry mouth, I try to drink more water-- I find it helps to have a really big bottle, about 48 oz., that I fill in the morning and then use all day. My aim is 1.5 of those big guys, plus random beverages along the way. 
In terms of the nose, I use a gentle saline nasal wash my primary care doc recommended. It seems to help. 

WOW. I love your new staging result: "Stage 4 with an asterisk"
Congratulations on having a care team that is going all Rambo on the stupid cancer. Can't wait to hear what happens next.

Oh dear, what a terrible worry. I will be keeping you-- and her-- in my prayers.

WOW. I love your new staging result: "Stage 4 with an asterisk"
Congratulations on having a care team that is going all Rambo on the stupid cancer. Can't wait to hear what happens next.

Oh dear, what a terrible worry. I will be keeping you-- and her-- in my prayers.

Oh dear, what a terrible worry. I will be keeping you-- and her-- in my prayers.

Oh, dear. What a worry. I’m thinking it might be more helpful to talk to a radiology nurse/doc/tech. That contrast is such a curse-blessing…. I’ll be keeping you in my thoughts. 
 
karen

Hi Tom. Hi everybody!

Oh, dear. What a worry. I’m thinking it might be more helpful to talk to a radiology nurse/doc/tech. That contrast is such a curse-blessing…. I’ll be keeping you in my thoughts. 
 
karen

Hi Karyn, 
I'm sorry your friend's comment was distressing for you. People mean well but sometimes the things they say are unintentionally hurtful or upsetting. I'm also sorry you are coping with so much. I'm also Stage 4 adenocarcinoma, but have no experience with the infusion combo you're experiencing.  
The  prognosis area of lung cancer has been turned on its head by recent results of research, so I have not found it beneficial to my mental health to pay attention to the survival stats. Not when I have friends in my local cancer group who have been living with Stage 4 lung cancer for 10, 12, 16 years, others who have lived for 10+ with one lung, etc. And these are people with active, meaningful lives. Terminal? Well, everyone is, when you get right down to it. We're just aware of it, more than the average person.
I'm not sure what your friend was getting at, but it seems that adopting a mindset that you're terminal is going to make you miserable. When people tell me I'm so brave or whatever else, I have a choice to buy in to their thinking or not. I think people say stuff like that because they're scared and on some level want to distance themselves from me. Last week, one person told me I had courage. We're good friends, so I could be frank. That was ridiculous, I told him, like I'm not going to do tests or have treatment plans? It doesn't take courage to do that, just common sense. What takes courage for me right now is to build a meaningful life within the parameters I currently have. So, what do I want? Yikes! In my book, that's a question that needs some courage to answer. It's certainly not one I expected at this point in my life. 
I'm glad you found us, Karyn. 

Yeah, Lahalsa, according to the stats I'm going to be dead any moment now. Or maybe I should have died already? Who knows-- my oncologist refuses to discuss that with me because research and treatments are progressing so fast. I looked recently at revised NCCN algorithms of symptoms and treatments and actually laughed out loud at the stats there. As long as I know people with Stage 4 lung cancer who have lived good quality lives for 16 years, I say phooey on the statistics. Today  I'm figuring out how to live a bright tomorrow. I haven't gotten there yet, and I'm not being particularly graceful about it, but damned if I'm going to surrender the things I love to stupid cancer. 
You might be interested in some NCCN patient info and a webinar about SCLC: https://www.nccn.org/patientresources/patient-resources/patient-webinars/patient-webinar-small-cell-lung-cancer
They also have an algorithm of treatment protocols for medical professionals: https://www.nccn.org/guidelines/guidelines-detail?category=1&id=1462. I've found it takes a bunch of careful reading and research to go through those. Perhaps you'll be more up for that a little down the road, when you're a little deeper into The Whole Thing-- I know it took me a while, and it was best not the force myself to take on more info than I was ready for. 
(The NCCN is the National Comprehensive Cancer Network, "a not-for-profit alliance of 32 leading cancer centers devoted to patient care, research, and education. NCCN is dedicated to improving and facilitating quality, effective, equitable, and accessible cancer care so all patients can live better lives.")
Thanks for being here-- it's the best lung cancer group on the web IMO.
Karen

So glad for you about the seizures, Justin. That's quite a worry. Is the aim to get you completely off the steroid? How quickly are they reducing your dose? 
That CT waiting is so agonizing, even if you know it's coming. Hang tough.
Karen 

So glad for you about the seizures, Justin. That's quite a worry. Is the aim to get you completely off the steroid? How quickly are they reducing your dose? 
That CT waiting is so agonizing, even if you know it's coming. Hang tough.
Karen 

Yeah, Lahalsa, according to the stats I'm going to be dead any moment now. Or maybe I should have died already? Who knows-- my oncologist refuses to discuss that with me because research and treatments are progressing so fast. I looked recently at revised NCCN algorithms of symptoms and treatments and actually laughed out loud at the stats there. As long as I know people with Stage 4 lung cancer who have lived good quality lives for 16 years, I say phooey on the statistics. Today  I'm figuring out how to live a bright tomorrow. I haven't gotten there yet, and I'm not being particularly graceful about it, but damned if I'm going to surrender the things I love to stupid cancer. 
You might be interested in some NCCN patient info and a webinar about SCLC: https://www.nccn.org/patientresources/patient-resources/patient-webinars/patient-webinar-small-cell-lung-cancer
They also have an algorithm of treatment protocols for medical professionals: https://www.nccn.org/guidelines/guidelines-detail?category=1&id=1462. I've found it takes a bunch of careful reading and research to go through those. Perhaps you'll be more up for that a little down the road, when you're a little deeper into The Whole Thing-- I know it took me a while, and it was best not the force myself to take on more info than I was ready for. 
(The NCCN is the National Comprehensive Cancer Network, "a not-for-profit alliance of 32 leading cancer centers devoted to patient care, research, and education. NCCN is dedicated to improving and facilitating quality, effective, equitable, and accessible cancer care so all patients can live better lives.")
Thanks for being here-- it's the best lung cancer group on the web IMO.
Karen

@BridgetO, whew, good for you! So sorry your wife suffered with it, though. I hope she is feeling better-- and that she had a good trip!
I'm coming out of the Covid woods. My husband brought it home with him from a church retreat he went on, from a guy who had no symptoms and had tested negative, but whose wife had just finished her isolation period. (Clearly, her isolation period was not long enough!)
I had a headache for a few days and that's it. Over the course of those days, I tested several times with negative results. Finally, about 6 days after the headache, I had a positive test. The same has happened to several other folks I know. The NP who talked with me said based solely on her observations, she thinks the virus is morphing all the time. I think symptoms should govern our behaviors,  not just test results. 
My 89 year old mom who lives with us has no symptoms and continues to test negative. Thank goodness!
What's fascinating is that my husband and I have different symptoms-- I have almost no cough and basically have slept since Sunday.  As well, we flew across the country in August and camped in a busy beach town for two weeks and no one in the family got sick. 
Stupid Covid. 
Stay well everyone. 

@BridgetO, whew, good for you! So sorry your wife suffered with it, though. I hope she is feeling better-- and that she had a good trip!
I'm coming out of the Covid woods. My husband brought it home with him from a church retreat he went on, from a guy who had no symptoms and had tested negative, but whose wife had just finished her isolation period. (Clearly, her isolation period was not long enough!)
I had a headache for a few days and that's it. Over the course of those days, I tested several times with negative results. Finally, about 6 days after the headache, I had a positive test. The same has happened to several other folks I know. The NP who talked with me said based solely on her observations, she thinks the virus is morphing all the time. I think symptoms should govern our behaviors,  not just test results. 
My 89 year old mom who lives with us has no symptoms and continues to test negative. Thank goodness!
What's fascinating is that my husband and I have different symptoms-- I have almost no cough and basically have slept since Sunday.  As well, we flew across the country in August and camped in a busy beach town for two weeks and no one in the family got sick. 
Stupid Covid. 
Stay well everyone. 

@BridgetO, whew, good for you! So sorry your wife suffered with it, though. I hope she is feeling better-- and that she had a good trip!
I'm coming out of the Covid woods. My husband brought it home with him from a church retreat he went on, from a guy who had no symptoms and had tested negative, but whose wife had just finished her isolation period. (Clearly, her isolation period was not long enough!)
I had a headache for a few days and that's it. Over the course of those days, I tested several times with negative results. Finally, about 6 days after the headache, I had a positive test. The same has happened to several other folks I know. The NP who talked with me said based solely on her observations, she thinks the virus is morphing all the time. I think symptoms should govern our behaviors,  not just test results. 
My 89 year old mom who lives with us has no symptoms and continues to test negative. Thank goodness!
What's fascinating is that my husband and I have different symptoms-- I have almost no cough and basically have slept since Sunday.  As well, we flew across the country in August and camped in a busy beach town for two weeks and no one in the family got sick. 
Stupid Covid. 
Stay well everyone.