Laurel77

Hi Christine. It's a scary diagnosis and a rollercoaster of emotions no matter what stage you are in. Here's hoping you are finished with this and need no further treatment. No guilt! We are all in different stages and points in our treatment, and as Justin said, it is always wonderful to hear good news.
Peace and love,
Laural

Hi Christine. It's a scary diagnosis and a rollercoaster of emotions no matter what stage you are in. Here's hoping you are finished with this and need no further treatment. No guilt! We are all in different stages and points in our treatment, and as Justin said, it is always wonderful to hear good news.
Peace and love,
Laural

I have stage 1 non small lc, confirmed after a pet scan and biopsy almost a month ago. When I write or speak the words lung cancer it’s still so strange to me. I’ve never smoked but my parent did.  Mine first was seen on a ct scan I had done. I recently had my lobe removed and feel pretty good actually. I sill don’t know the details yet but I’m hopeful I won’t need any additional treatment.  I am going through some strange emotions, almost like a guilt. Am I even allowed to post here? When I read everyone’s stories it breaks my heart. ♥️ Nice to meet you all. What a wonderful group of people.

Hi Christinee 
Nice to meet you welcome and of course you are allowed here, sorry you have to be here though, but it really is a great community and very supportive it certainly helped me through some rough times, please don't feel bad about surviving this horrible disease that's everyones hope on this forum there are so many survival stories it's fantastic and makes all the difference to our moral,
Goodluck with your results and hopefully no further treatment will be needed and you can get on with living your life as you should be,
All the best Take care Justin x

I was diagnosed with stage IV NSCLC with on September 23, 2022; PET scan with 3.3 cm mass with multiple bilateral pulmonary nodules. My biomarker test showed that I have EGFR exon 21 deletion. I have been healthy and active for the past 57 years. Trying to navigator through this cancer journey with you all. "A cheerful heart is good medicine, but a crushed spirit dries up the bones." (Proverbs 17:22) 

Another welcome for you. This forum has helped me when I have felt crushed. We’re all in this together and how much better can that be? Love to you, Suzan

Yu-tai 
Welcome to the forum, I know how hard it is coping with all this it really is a difficult road but it does get easier, you will find lots of support from members who are going through the same as you, 
Goodluck with everything all the best Take care Justin 

Yu-Tai, 
Welcome to our forums.  Sorry you need to be here though.  You don't mention if the tumor has metastasized beyond the lung, but I am making the assumption that you've had a full tissue or blood biopsy to confirm the malignancy.  I sure understand how upsetting a diagnosis like this can be as I went through it myself (as have many others here).  You really would do well to learn all that you can and there is some very good information from NIH regarding EGFR and it can be found here.  Additionally we have some forums that focus on mutations including EGFR and they can be found on this page.
Another important blog is titled "10 Steps to Surviving Lung Cancer; from a Survivor"...you can find that at this location.

Please update us with as much information as you can so our folks can offer knowledge from their experiences with you.  Also feel free to ask any questions you may have.
Lou

Thank you all for replying and encouragement, I'm only on a small dose of the steroids now they said they will review it on the 27th it would be nice if I can come off of them now I don't like the swelling it causes, thank you all again for your well wishes and support hopefully a good scan will make everything worth doing, I hope you all are doing well and enjoying life as you should, 
All the best Take care Justin 

Hi everyone 
Hope everyone is doing well, just wanted to let you all know I haven't had any further problems with seizure activity since going back on the dexamethasone even though it's the reduced amount so thats good news,I have a body CT SCAN on Monday and an appointment on 27th October for results of the test but they told me there is a problem with radiologists at the moment so expect a couple weeks delay so unfortunately going to be a long wait lol,
All the best Justin 

Re. hair, it is not vain, we live in a society that often judges us by our hair and looks so it is a big deal in the beginning. As Laurel77 said, not all chemo makes you lose your hair. Mine just thinned (so much) but to an outside observer looked normal and people would not know I was very sick! However, my locks seem to have lost their bouncy curl and are now much flatter, frizzier/damaged and merely wavy. I don't feel myself still but then again lung cancer changed everything about my life. Hair is not remotely a priority for me but I still miss my curls. On the bright side, I coloured my hair for the first time in years and it felt good. Now if I could only find a hair salon that can cut and style my hair in open air!

Hi Lahalsa. I too was diagnosed with Sclc in the upper right lung with a 1.1 cm nodule and 2.2 cm hilar adenopathy. Biopsy showed other lymph nodes as negative for malignancy. I was staged as 3B but limited stage as was only in right lung. I had 4 rounds of chemo (carboplatin and etoposide) and started 30 sessions of daily radiation with my second round. I received a steroid and anti nausea meds before my chemo and didn’t experience any ill side effects besides fatigue and hair started falling out so shaved my head. I too always had hair down the middle of my back but losing it is a small price to pay to continue living. It is growing back…different color and curly! My nodule and hilar lymph have shrunk and I am considered stable now. I was diagnosed in Nov 2021, started treatment in Dec and completed chemo and radiation in Feb. I have CT of chest/abdomen and mri of brain coming up Oct 18 and hoping for continued stability. As LilyMir said, if you can take some medical leave do it so you can rest and stay strong to fight this. I also ate lots of fruits and veges. You have got this and we are all here for you. Stay strong!
Pam

Lahalsa,
Here is information about treatments for small cell lung cancer (SCLC).
As an Extensive-stage patient, radiation may not be offered, but I'd ask. Limited-stage patients get fractional general radiation along with chemotherapy. But this type of radiation may not be able to cover all your metastatic sites. We have a form of radiation called stereotactic ablative radiation therapy or SABR. Please ensure you have a consultation with a radiation oncologist who is the expert in this method of treatment. Here is information on radiation used to treat SCKC. SCLC often moves to the brain so ensure you ask your radiation oncologist about a brain scan or MRI to rule out what we call brain mets.
The normal course of chemotherapy treatment is 4 rounds of a platinum based drug (cisplatin or carboplatin) paired with etoposide. The time between each round varies based on the dose and extent of metastatic cancer. Your medical oncologist will direct your chemotherapy. 
An exciting new development in SCLC treatment is the use of immunotherapy. Often an immunotherapy drug is paired with platinum based and etoposide. Be sure to ask if immunotherapy is and available treatment method. When immunotherapy works, it works exceedingly well.
Stay the course.
Tom

Lahalsa, times have changed, and not all chemo will cause you to lose your hair. I am currently on Cisplatin/Alimta and was told by my docs that this will not make my hair fall out. Bonus. It is not stupid or vain to worry about losing your hair, it is just another horror and life changing experience this wretched disease lays on you. Of course we would all choose life over hair, but still. WTH, right?
Personally, I had a serious issue with anger over this happening to me in the first place. I was (and still am some days), just plain pissed off about it. I want to be who I was before cancer, and the fact that I am not is quite upsetting, to say the least. However, the fight against this beast is first and foremost, so I direct my anger at cancer, and look forward to the day I can eliminate it from my life.
You have many more road trips in your future.  Let's kick some cancerous *ss, eh? 

Lahalsa, times have changed, and not all chemo will cause you to lose your hair. I am currently on Cisplatin/Alimta and was told by my docs that this will not make my hair fall out. Bonus. It is not stupid or vain to worry about losing your hair, it is just another horror and life changing experience this wretched disease lays on you. Of course we would all choose life over hair, but still. WTH, right?
Personally, I had a serious issue with anger over this happening to me in the first place. I was (and still am some days), just plain pissed off about it. I want to be who I was before cancer, and the fact that I am not is quite upsetting, to say the least. However, the fight against this beast is first and foremost, so I direct my anger at cancer, and look forward to the day I can eliminate it from my life.
You have many more road trips in your future.  Let's kick some cancerous *ss, eh? 

Hi and welcome to this wonderful group. The others gave you great advice but I will add a recommendation to try and rest so you give your body healing time. If you can have it or can afford it, consider taking medical leave so you can focus your energy on healing. This may also protect you this winter as COVID surges while your immunity is likely to be compromised due to chemo. Stay positive and hopefully you hear good news soon about your treatment working. Best wishes.

Hi lahalsa 
I'm really sorry you have to be here, as the others have said it's not the automatic death sentence it once was and we have all felt like you are in the beginning, please stay as strong and positive as you can it will help, I was worried about the chemotherapy and radiotherapy but it wasn't as bad as I had made it in my mind I was also worried about losing my hair but it just thinned out, you will get through this and everyone on this site is with you and praying for you 
Take care Justin x 

Thanks Lou and Laurel - I really appreciate it!
Reading others' stories on here has inspired hope - especially since my research on SCLC with malignant pleural effusion says I'll be dead in 3-12 months. THAT had my chin in the dirt for a few hours...but I am ready to fight...I have PUSHED my "Team" (who knew I'd be getting a team) to get me into every test absolutely as fast as possible regardless of where I have to go to get it (I've been to 3 different cities for testing) - hence, the reason I was able to get it all done so quickly - and now I'm begging them to start my treatment NEXT week (so funny, only people on here would probably understand someone BEGGING for chemo).
I am ready to fight - happy to hear about rapid advances in treatment - and - that maybe this is not an automatic death sentence - or - at least not such an immediate death sentence! I ride an 850 pound Harley Davidson (by myself) - my husband and I ride our bikes every weekend and just rode 250-300 miles Sunday - it's hard for me to imagine that I won't be here in a few months - it doesn't even make sense!
So, instead of thinking about how long I have before I die, I'm going to focus on fighting.  Thanks for sharing your chemo experience Laurel - of course I'm super nervous about it - still working full-time of course - I've just been taking sick time as needed for tests/procedures thus far...hoping I can continue working - even through treatment - just taking a day - or days - as needed for any ill effects. I've had long hair my whole life - it's 3/4's of the way down my back - and I know it's vain, stupid, and a tiny thing in the grand scheme of things, but I'm already grieving the loss of my hair (how long till that happens?).  
I appreciate your comments Lou and Laurel - thank you for taking the time to greet and educate/share with me!

Hey Lahalsa!
Oh my goodness, I know your fears all too well, as everyone here does. The initial diagnosis is terrifying. The waiting is excruciating, the tests, the scans, the worry, the HORROR ...ugh. ..we've all been there. Sending a huge hug to you!! You WILL get through this. Each day that passes will bring you more resolve to fight the fight, and fight you must.
KNOW, that cancer treatment has come farther in the past 5 years than it has in the past 50. Also, as Lou said, many people here were diagnosed with stage 3 and 4 DECADES ago and are still going strong. Cancer is NOT a death sentence.
 I am recently diagnosed myself with stage 3 lung cancer which spread to the nodes near my collarbone. The thought of starting chemo and radiation scared me even more than the cancer did. Now, it has just become my new routine. It is not as bad as you fear, and I had myself all worked up over it for nothing. For any side effect you may (or may not) get, there are meds and tips to make you feel better. Last Tuesday was my first chemo treatment, and I am 12 days into the daily radiation treatments. The first two days after chemo were fine. The 3rd, I felt some fatigue and nausea. By the 5th day, I was back to work.
I think you will find, as I did, that the care teams are absolutely wonderful people, and will do everything they can to help you through this. We will be here for you as well!!
Fight the fight, darlin'. You've got this!
Peace and love to you,
Laural

Hey Lahalsa!
Oh my goodness, I know your fears all too well, as everyone here does. The initial diagnosis is terrifying. The waiting is excruciating, the tests, the scans, the worry, the HORROR ...ugh. ..we've all been there. Sending a huge hug to you!! You WILL get through this. Each day that passes will bring you more resolve to fight the fight, and fight you must.
KNOW, that cancer treatment has come farther in the past 5 years than it has in the past 50. Also, as Lou said, many people here were diagnosed with stage 3 and 4 DECADES ago and are still going strong. Cancer is NOT a death sentence.
 I am recently diagnosed myself with stage 3 lung cancer which spread to the nodes near my collarbone. The thought of starting chemo and radiation scared me even more than the cancer did. Now, it has just become my new routine. It is not as bad as you fear, and I had myself all worked up over it for nothing. For any side effect you may (or may not) get, there are meds and tips to make you feel better. Last Tuesday was my first chemo treatment, and I am 12 days into the daily radiation treatments. The first two days after chemo were fine. The 3rd, I felt some fatigue and nausea. By the 5th day, I was back to work.
I think you will find, as I did, that the care teams are absolutely wonderful people, and will do everything they can to help you through this. We will be here for you as well!!
Fight the fight, darlin'. You've got this!
Peace and love to you,
Laural

Hey Lahalsa!
Oh my goodness, I know your fears all too well, as everyone here does. The initial diagnosis is terrifying. The waiting is excruciating, the tests, the scans, the worry, the HORROR ...ugh. ..we've all been there. Sending a huge hug to you!! You WILL get through this. Each day that passes will bring you more resolve to fight the fight, and fight you must.
KNOW, that cancer treatment has come farther in the past 5 years than it has in the past 50. Also, as Lou said, many people here were diagnosed with stage 3 and 4 DECADES ago and are still going strong. Cancer is NOT a death sentence.
 I am recently diagnosed myself with stage 3 lung cancer which spread to the nodes near my collarbone. The thought of starting chemo and radiation scared me even more than the cancer did. Now, it has just become my new routine. It is not as bad as you fear, and I had myself all worked up over it for nothing. For any side effect you may (or may not) get, there are meds and tips to make you feel better. Last Tuesday was my first chemo treatment, and I am 12 days into the daily radiation treatments. The first two days after chemo were fine. The 3rd, I felt some fatigue and nausea. By the 5th day, I was back to work.
I think you will find, as I did, that the care teams are absolutely wonderful people, and will do everything they can to help you through this. We will be here for you as well!!
Fight the fight, darlin'. You've got this!
Peace and love to you,
Laural

Guys!
I have great news! Today will be my last chemo!! After today, I will just be on keytruda :). I’m so thankful for everything and the support I’ve received from everyone here. The fight isn’t over but it seems like the light at the end of the tunnel is approaching me.
Maintaining a good attitude and just living life day to day like it doesn’t exist is truly the key to fighting this. Everyone else that’s fighting, just keep pushing and you’ll make it! Believe me, god works miracles to those who go through his trials in life. 
 
Ale 🤍

Karyn,
I know only 2 things for certain--I was born and I will die. When, I don't know. So I am "terminal" also. The only uncertainty in my certain knowledge is when. Eighteen years ago, when diagnosed, I had a lifespan projection of around 6 months!
You mention hope and I recall the character Andy Dufresne's pronouncement in the movie Shawshank Redemption--"hope is a good thing and good things never die." Hope indeed is a good thing, and I hope your next scan does shows further reduction--heck--I hope for elimination. I've thought a lot about hope. Here and here are some of my musings on the topic.
I understand your reluctance to discard carboplatin but as you say, it is powerful stuff and over time can do more harm than good. Maintenance therapy is a pretty established concept in lung cancer treatment today. Moreover, I bet it is paired with frequent scans to keep an eye on things. And, if necessary, your doctor can always bring out the big gun to deal with a recurrence.
Welcome here by the way. 
Stay the course.
Tom

Lahalsa,
Welcome to the club nobody wants to be a part of.  The first thing I can tell you is that lung cancer is not the automatic death sentence it once was.  So please take everything one step at a time.  Our forum is filled with survivors some were diagnosed many years ago.  You'll soon be hearing from others who were also diagnosed at Stage 3 and 4 and you should ask any and all questions you have on your mind.  Nothing is ridiculous or off-limits.
Next I'd like you to take a read on a blog titled "10 Steps to Surviving Lung Cancer; from a Survivor".  It can be found here.  BTW, the writer is still here 18 years after a Stage 3 & 4 diagnosis.
Keep posting and coming back.  You're not alone now.
Lou

Hi Karyn!
Of course there is hope, that is why we are all here. I will let others with more experience as to your particular type of cancer answer the big questions. I just popped in because I can relate to your feelings and the story you shared. I felt the same way, and all I could think about after my lung cancer diagnosis was my mom and dad, who both died from lung cancer. Mom opted for the treatment, dad did not.  Mind you, this was years ago, (28 yrs ago for mom and 15 for dad), and cancer treatment has come a long, long way since. Still, beginning treatment was the scariest thing I have ever done. But, as Karen L above said, what else is there? A fight has been brought to us, and fight we must. It is the ONLY option.
I also get the 'friends' and their good intentions yet sometimes stupid words. Also the 'look' some give you like you are already dead. They do not know any better, and I find talking to people who have or are actually going through the cancer and treatment is the most helpful, hopeful and informative way to go. They get it. Our friends, in spite of their good intentions, .. do not. I also rely heavily on my wonderful care team to answer questions. I've found that questions are very important, as is being your own advocate. Our busy medical teams sometimes forget to explain everything, and /or assume you already know or were told. Whatever the case, I hammer them with questions constantly.
I completed my first round of chemo last week. I'm also on daily radiation treatments. I made it through the worst of the chemo side effects and am feeling better today. I'm not sure what to expect, as I have been told the side effects get worse with each round, but forward is the only direction I can take.
Fight the fight, Karyn, and NEVER lose hope. I have recently met many folks with different types of so called 'terminal' cancer who have survived for years and years and are still fighting on and enjoying their lives. They have become my inspiration.
Everyone here has your back, and we will be with you every step of the way.
Peace and love, 
Laural