Karen_L

What mutations are you dealing with? My saved research is about EGFR mutations.

Thanks so much everyone. I'm doing okay, but in a way, I knew it was coming. Everyone around me was in denial throughout the diagnosis process, but not me. My loved ones are having a lot of problems.
I'll keep you posted 😊

Nodules are funny beasts. Often, they just go away on their own. Mine have. They appeared after treatment, then faded away in the months that followed. 
Mayo Clinic has some good info. (Here) and the American Cancer Society. (Here) From what I remember, the action point on a nodule is 4 mm. Otherwise, they just watch. As my oncology radiologist says, "If it's cancer, it will announce itself." How? "It grows." It may well be you mother's nodules are not malignant. Just be sure you're at a solid cancer center, with a lung cancer specialist. 
Please take any predictions on how much time she has left with a large grain of salt, perhaps something the size of a salt lick. My oncologists refuse to even enter that discussion. I know people who have been given months and are still alive and kicking -- happily-- many years after their predicted demise. The statistics you can ind are usually old. Other's here can speak more knowledgeably about the whys of this. 
Karen
 
 
 

No knowledge here, but what a great question to ask. If you dive deeply into the Arizona website, you may find that info, but why not just call and ask if they're affiliated? 
Hope your family reunion is going well.
Karen

Rayj
Thanks so much for sharing your journey. I love that you've made such a rich life for yourself! May it continue for a long time.
Karen

Great news! Finishing treatment is so great! But I also remember being a little nervous when I drove away from the cancer center that last time. I hope you find your way to some daily pleasures and lots of peace. 
 
Karen

Nodules are funny beasts. Often, they just go away on their own. Mine have. They appeared after treatment, then faded away in the months that followed. 
Mayo Clinic has some good info. (Here) and the American Cancer Society. (Here) From what I remember, the action point on a nodule is 4 mm. Otherwise, they just watch. As my oncology radiologist says, "If it's cancer, it will announce itself." How? "It grows." It may well be you mother's nodules are not malignant. Just be sure you're at a solid cancer center, with a lung cancer specialist. 
Please take any predictions on how much time she has left with a large grain of salt, perhaps something the size of a salt lick. My oncologists refuse to even enter that discussion. I know people who have been given months and are still alive and kicking -- happily-- many years after their predicted demise. The statistics you can ind are usually old. Other's here can speak more knowledgeably about the whys of this. 
Karen
 
 
 

No knowledge here, but what a great question to ask. If you dive deeply into the Arizona website, you may find that info, but why not just call and ask if they're affiliated? 
Hope your family reunion is going well.
Karen

Great news! Finishing treatment is so great! But I also remember being a little nervous when I drove away from the cancer center that last time. I hope you find your way to some daily pleasures and lots of peace. 
 
Karen

"1. Stable posttreatment changes in right lower lung.
2. No adenopathy or recurrent disease.
"
I had two fabulous weeks in Italy, now a report of no recurrent disease. What else matters? 
Brain check-up next month. 
Hope you're all having some nice moments in your days. 
Karen
 

Hi Ellen,
Waiting for the biomarker results can be excruciating. The hardest thing to do right now is keep your mind exactly where your body is, in the current moment. The minute I catch myself in "What if__________" mode, I am headed off the rails. Now. Today. You can do this. Please keep us posted.
 
Karen

I'm with @Pstar on the thought that they might be willing switch from cisplatin to carboplatin. That seems easier to tolerate for most folks. I am NSCLC, which has a whole different set of treatment protocols, but you never know. I was also a durvalumab girl, which was not a good match for me, but it is a great thing when it is effective for patients. I have a drawerful of anti nausea meds and was encouraged by the nurses to not hesitate to use them, even as preventive. 
I had about 5 weeks of daily radiation and was very lucky to have had minimal side effects-- except wicked exhaustion. Best thing I did to cope with radiation was try to stay active. Early on, that meant getting up. Eventually, trying to walk up the stairs. I also bought a blender; smoothies are now part of my regular routine. I also was prescribed swallow therapy-- who knew that was a thing-- in the event of esophageal side effects. (I had hilar nodes, which are right next to the esophagus, so radiation burn was a concern.) I have a drawerful of preventive meds, which I was lucky enough to not need. 
My philosophy is just say yes to every med they offer. Do you have a palliative care specialist? They are miracle workers when it comes to helping cope with treatment. The social worker ought to be able to help set that up. 
Don't give up-- many people find their body adjusts to chemo over time. We can hope that is true for you!
Keep us posted,
Karen

Hi Marianne,
I recognize my own path in your description! L858R is one of the most common EGFR mutations. That means there's been a (comparatively) good amount of research that's been done.
I encourage you to keep up your activities to the degree you can. I'm currently training for a very challenging distance bike ride with exciting(!) elevation gains. I'm up to 53 miles and good improvement on hills. Two years ago, I gave myself an Olympic gold medal for walking 2200 steps in one day. So, there's lots of life after a diagnosis of stupid lung cancer. 
I know fatigue can be a side effect of Tag, but even mild exercise can offset those effects.
Welcome aboard, and best of luck on the next scan.
Keep us posted,
Karen

Hi Marianne,
I recognize my own path in your description! L858R is one of the most common EGFR mutations. That means there's been a (comparatively) good amount of research that's been done.
I encourage you to keep up your activities to the degree you can. I'm currently training for a very challenging distance bike ride with exciting(!) elevation gains. I'm up to 53 miles and good improvement on hills. Two years ago, I gave myself an Olympic gold medal for walking 2200 steps in one day. So, there's lots of life after a diagnosis of stupid lung cancer. 
I know fatigue can be a side effect of Tag, but even mild exercise can offset those effects.
Welcome aboard, and best of luck on the next scan.
Keep us posted,
Karen

I'm with @Pstar on the thought that they might be willing switch from cisplatin to carboplatin. That seems easier to tolerate for most folks. I am NSCLC, which has a whole different set of treatment protocols, but you never know. I was also a durvalumab girl, which was not a good match for me, but it is a great thing when it is effective for patients. I have a drawerful of anti nausea meds and was encouraged by the nurses to not hesitate to use them, even as preventive. 
I had about 5 weeks of daily radiation and was very lucky to have had minimal side effects-- except wicked exhaustion. Best thing I did to cope with radiation was try to stay active. Early on, that meant getting up. Eventually, trying to walk up the stairs. I also bought a blender; smoothies are now part of my regular routine. I also was prescribed swallow therapy-- who knew that was a thing-- in the event of esophageal side effects. (I had hilar nodes, which are right next to the esophagus, so radiation burn was a concern.) I have a drawerful of preventive meds, which I was lucky enough to not need. 
My philosophy is just say yes to every med they offer. Do you have a palliative care specialist? They are miracle workers when it comes to helping cope with treatment. The social worker ought to be able to help set that up. 
Don't give up-- many people find their body adjusts to chemo over time. We can hope that is true for you!
Keep us posted,
Karen

Hi Ellen,
Waiting for the biomarker results can be excruciating. The hardest thing to do right now is keep your mind exactly where your body is, in the current moment. The minute I catch myself in "What if__________" mode, I am headed off the rails. Now. Today. You can do this. Please keep us posted.
 
Karen

Hi Ellen,
Waiting for the biomarker results can be excruciating. The hardest thing to do right now is keep your mind exactly where your body is, in the current moment. The minute I catch myself in "What if__________" mode, I am headed off the rails. Now. Today. You can do this. Please keep us posted.
 
Karen

Johnny, welcome to the best place to land after receiving the news. I look forward to hearing more about your situation.
Karen 

Who ever thought that surgery, brain MRIs, ultrasounds, etc. would become just more things on the schedule. You're a trouper, Ken, and the fact that this thing is sealed is such great news. And soon you will be able to enjoy whatever your favorite fat item is. For me, it would be really good bread and butter, but everyone has their own priorities. Keep up the great work!

Dang that cat! They are such opinionated beasts, aren't they? I'm hoping he's forgiven you and offering a few snuggles. 
The trauma of major surgery coupled with the uncertainties of what's next is really hard. I hope you are giving yourself some grace to just take it slow. It's OK to stay in your jammies and curl up with a book or have some naps. I always appreciate some good mindless TV. My current fav is a Netflix original called Is It Cake?  
I understand your trepidation about radiation, but I'm betting they can do this with several big zaps (Tom probably knows the medical terms for this.) The sugar thing: ugh. The steroids thing: I know this ride really well. For me, it took some time for my body to settle in, but when it did, life got much less complicated. I hope this happens for you sooner rather than later.
Hang in. Your body is strong and your spirit will buoy you up. We're here for you!
Karen 
 

Dang that cat! They are such opinionated beasts, aren't they? I'm hoping he's forgiven you and offering a few snuggles. 
The trauma of major surgery coupled with the uncertainties of what's next is really hard. I hope you are giving yourself some grace to just take it slow. It's OK to stay in your jammies and curl up with a book or have some naps. I always appreciate some good mindless TV. My current fav is a Netflix original called Is It Cake?  
I understand your trepidation about radiation, but I'm betting they can do this with several big zaps (Tom probably knows the medical terms for this.) The sugar thing: ugh. The steroids thing: I know this ride really well. For me, it took some time for my body to settle in, but when it did, life got much less complicated. I hope this happens for you sooner rather than later.
Hang in. Your body is strong and your spirit will buoy you up. We're here for you!
Karen 
 

Dang that cat! They are such opinionated beasts, aren't they? I'm hoping he's forgiven you and offering a few snuggles. 
The trauma of major surgery coupled with the uncertainties of what's next is really hard. I hope you are giving yourself some grace to just take it slow. It's OK to stay in your jammies and curl up with a book or have some naps. I always appreciate some good mindless TV. My current fav is a Netflix original called Is It Cake?  
I understand your trepidation about radiation, but I'm betting they can do this with several big zaps (Tom probably knows the medical terms for this.) The sugar thing: ugh. The steroids thing: I know this ride really well. For me, it took some time for my body to settle in, but when it did, life got much less complicated. I hope this happens for you sooner rather than later.
Hang in. Your body is strong and your spirit will buoy you up. We're here for you!
Karen 
 

Dang that cat! They are such opinionated beasts, aren't they? I'm hoping he's forgiven you and offering a few snuggles. 
The trauma of major surgery coupled with the uncertainties of what's next is really hard. I hope you are giving yourself some grace to just take it slow. It's OK to stay in your jammies and curl up with a book or have some naps. I always appreciate some good mindless TV. My current fav is a Netflix original called Is It Cake?  
I understand your trepidation about radiation, but I'm betting they can do this with several big zaps (Tom probably knows the medical terms for this.) The sugar thing: ugh. The steroids thing: I know this ride really well. For me, it took some time for my body to settle in, but when it did, life got much less complicated. I hope this happens for you sooner rather than later.
Hang in. Your body is strong and your spirit will buoy you up. We're here for you!
Karen 
 

FIVE hours? That was a lot more than you-- or the surgeon-- anticipated. I'm sorry it wasn't as straightforward as you'd hoped, but the unexpected seems about par for the course with this goofy disease. The great news is the result. I'm with Lou-- 90% is a dandy start in my mind. I hope you are up and about soon, although that hospital sounds poshy enough that maybe you'd rather stay another day? (Only kidding.) So glad to hear from you. 

That’s the  big one. I recently heard a podcast about hope— behind a paywall, so I signed up for a 7day trial and then cancelled— and wrote about it here. 
I’ve found the further out from the initial treatment I get, the more I accept the disease as part of my life. The fear subsides when I shift my focus away from “what if______ “ [fill in the blank] to “what’s now?” because this moment is the only thing I’ve got for sure. Shifting the focus to the current day takes some practice, but it’s worth it. 
I’ve found the mental part of lung cancer to sometimes feel more challenging than the treatment itself. I see a counselor, which helps me keep my head on straight. 
Hang in, and keep us posted. 
Karen