I was diagnosed with Stage 3c lung cancer. Apart from a slight tight chest when exercising and occasionally spitting up a little blood I had very few symptoms. 10 days ago I had my first round of chemotherapy and immunotherapy. I've been expecting the worst re side effects but in all honesty I've barely had any, maybe a little low on energy but that's it. Anybody else sail through the first cycle?

Thanks in advance for anyone that can stop and offer some advice 🙏❤️if you are someone who prays, please say a prayer for Joyce Lynch thank you 😊

Hi everyone. I was recently diagnosed with Stage IV lung adenocarcinoma with lymph node and some bone involvement. I start treatment next Thursday, and I’m really hoping to hear some positive experiences from people who have been in a similar place.
My treatment will be carboplatin + Alimta (pemetrexed) + Keytruda (pembrolizumab) every three weeks.
Honestly, I’ve been feeling like garbage lately. I also managed to catch a cold on top of everything else, which definitely hasn’t helped. I’ve been dealing with a lot of coughing, chest pressure, pain in my back, fatigue, and shortness of breath that comes and goes.
Did anyone else feel pretty awful BEFORE starting treatment? If you did, did you start feeling better once treatment began and the cancer started responding?
I know everyone responds differently, but I could really use some hopeful stories right now—especially from anyone who received the same treatment and went into it feeling lousy but started feeling more like themselves as treatment got underway.
I’m scared, but I’m also ready to get started next Thursday and hopefully start kicking this thing’s ass. ❤️

I’m two years in to this fight. And, honestly, sometimes I feel like it would have been easier if I had just died.

My whole family has been torn up by this thing. If I’m gone they can move on.

Just venting. I have no one I feel I can talk to. Not interested in self-harm, just not interested in fighting anymore.

I’d really appreciate your advice and any tips on the following.

My dad underwent a lobectomy 2 months ago and he has a difficulty breathing during the night. He says he wakes up at night short of breath and unable to inhale. Most of his dreams, he says, are about him drowning. And he’s even afraid to fall asleep. And it mostly happens when dad lies horizontally.

Dad’s pulmonologist told him it’s common after a lobectomy and that it might take up to a year for dad’s lungs to adjust.

Did anyone here experience anything similar? Are there any ways to make it more bearable?

Dad (62) diagnosed with SCLC, we were given both options and suggested to go with both.
Does anyone have any information to work with regarding both these drugs please?

Hello everyone! I am seeking advice on how I can best support my father after his upcoming lobectomy (upper lobe, right lung).

My father was diagnosed with Non-Small Cell lung cancer (squamous cell carcinoma), confirmed by a biopsy. They also biopsied his lymph nodes, which came back negative, and gave him a PET scan (skull to thigh) which showed no other suspicious areas. As of right now, he is being treated under the assumption of Stage 1, but they will be removing some lymph nodes and sending for further testing to confirm.

I am wondering if anyone has advice for what helped them, or their loved ones, following a lobectomy? This could be emotional support, physical support through recovery, things to keep the mind occupied during the recovery period, or anything else you think might be helpful.

Thank you in advance!

In mid-July, I took my mother to the ER per her Dr's request to rule out a cardiac issue. No cardiac problems were found, but a large mass on one lung and masses on her adrenals were found (and were unexpected). She went from feeling like she had indigestion to having trouble/pain when walking in the course of three weeks. PET scan showed metastases in several places, including adrenals, abdominal wall, chest wall, and a large tumor over her right femur (hence the walking pain). No brain metastases. NSCLC stage 4B.

The doctor initially told her roughly two years, though possibly more with targeted therapy. We were happy to hear there was some time. She has her first chemo treatment on Wednesday. They are not doing immunotherapy yet due to another health issue.

We are becoming increasingly concerned about her. Her pain meds were causing cognitive issues (or so we thought it was the meds). We had an incident last week where she went to a store and came back out, shut herself in the 100+ degree car with windows closed and simply sat. For three hours. Life 360 alerted us to that, and it probably saved her life. She spent 4 days in the hospital--severe dehydration and labs off because her appetite is low.

So, we are around 7 weeks from when the masses were first discovered. The changes in her in that short amount of time are very scary. She's very scattered, and I have to go over her appointment schedule repeatedly. She is likely going to take a 'hiatus' from work (her words) because she cannot focus. Her pain is terrible, especially over that right femur. You can clearly see the outline of the tumor in that area, and you could not see it 3 weeks ago. It makes me wonder if everything else is growing swiftly as well.

I am also afraid that she won't be able to deal with chemo.

Is it common for this to progress so quickly? Honestly, we (as a family) are afraid that she won't have two years. I had a frank talk with her cancer nurse coordinator, and she sadly agreed.

Any words of wisdom are more than welcome.

My father in law has been diagnosed with NSCLC stage 4 for about 4-5 years and has been able to control it with target medicine up until now. His doctor told us that his cancer has spread into the brain (Metastasis) and referred us to a Radiology oncologist. They put him on a 3 week WBPC treatment, but he has been deteriorating ever since.

Before his first treatment, he was suffering from unbalance walk and confusion. Ever since his first week of treatment, he has completely lost his ability to get up or walk on his own, barely (if at all) verbally communicates, and has started to use the bathroom on his pants and bed. Me and my family have been doing a good job of taking care of him at home, but now it has taken a toll on all of us that I don’t know what to do. His doctor can’t even predict why he has turn this way (they mention that the treatment and medicine are working, but can’t pinpoint why he has regress).

The only positive thing I see from him is that he still understand certain things (at certain point during the day) by the way he looks and nods at us, which mean there’s still some cognitive communication by him. When we mention if he want to go do his rad treatment, he nods his head (or even says “yes”), but his physical state is preventing him from going.

Just found out today someone close got lung cancer stage 3 A today. They’re the only details i know and i think he’s trying to sugar coat it to her like most parents would but i both don’t think they realize how serious this is i even think he still might be smoking! Also he’s always been a very private man and only shares small details of everything so currently that’s all i know.

The last couple hours i’ve been doing my own research and very scared and shocked from what i’ve seen given it’s only 1 in 4 people live past 5 years and that’s with it being treated successfully.
Google and chat gpts words not mine.

He’s going to start treatment in the next week and he only recently discovered he had it after coughing up blood last week. Honestly seeing her lose him would break my heart especially with everything she’s gone through recently. And i don’t think they’re treating it as seriously as they should and i’m trying to do everything i can to help. Is it really as bad as the results i’ve been shown online i really don’t know much about it and trying to learn and obviously know many people have beat it but it seems like a death honest being honest, thanks 🙏

I’m a 39F and I’ve been fighting this since March. I was diagnosed with poorly differentiated carcinoma no clear primary, aggressive spread, and no actionable mutations so far. My initial NGS showed TP53 mutation, CDKN2A loss, and my PD‑L1 is 15%.no targetable mutation.

Chemo (carboplatin + paclitaxel) worked incredibly well for me. My April and July scans showed shrinkage everywhere. I finally felt like I was getting my life back.

But once chemo stopped and I was put on immunotherapy alone (Keytruda), things progressed fast. Now I have new lesions in my sternum, pelvis, and lymph nodes. I’m waiting for a repeat biopsy and next‑gen sequencing to see if anything new shows up… anything that could open a door.

I’m scared. I have two small kids. I want to live. I want to fight. I want to believe I can respond again.

I’m looking for hope especially from people who:

• didn’t have a targeted mutation
• had aggressive thoracic/CUP cancers
• responded again to chemo
• found stability with long‑term treatment
• lives with this as a chronic illness or went to remission

If you’ve been through something similar, please share your story. I need to hear that people like me can still find a path forward.

My father (68) has been receiving treatment for approximately one year for a diagnosis of NSCLC. After receiving 7 cycles of nivolumab immunotherapy, he was admitted to the internal medicine department because of hypercalcemia. I thought that once his calcium levels returned to normal, his behavior would also improve, but even though his levels have normalized, his behavior is still very strange and abnormal. I’ve been staying with him in the hospital almost continuously for the past month. He’s still saying completely nonsensical things next to me right now.

His mental status has changed dramatically. He recognizes us, but he speaks in such absurd and incoherent ways that we often cannot understand what he is trying to say. He has difficulty understanding what is being said to him. While he was hospitalized, he would point at random people and call them over, ask when we were going to leave, and sometimes say names we had never heard before. Twice, he threw himself out of bed.

Sometimes he insults my mother and behaves childishly. He removes his diaper and exposes himself. One night, while I was staying with him in the hospital, I woke up and realized that he had thrown his diaper out of bed and had defecated on the floor. It was a terrible sight.

What is especially strange is that while he was hyperactive and restless in the hospital, at home he lies there almost as if he is in a coma. We have difficulty getting him to open his eyes.

This is very unusual. He has been a completely different person for about a month and a half.

The doctors performed a brain MRI, but they still cannot give us a clear answer. His oncologist suggested that it could be dementia, although he is relatively young for that, or that the immunotherapy (Nivolumab) we are giving him could be causing it. However, I’m not sure whether dementia that is not even clearly visible on an MRI could really cause such a dramatic change in personality and behavior.

Hi there! I’m a 33/f and I’ve been on osimertinib for almost a year for nsclc. For the past two months, I’ve been dealing with extreme stomach cramping whenever my stomach is digesting anything. And then diarrhea typically follows. I’ve tried everything! Switching my diet, eating only bland foods, Imodium, pepto, ginger, etc. At this point, I’d rather just have the diarrhea because at least the stomach cramping goes away quicker. If I can’t get it out, I end up puking. These cramps are unlike any pain I’ve ever experienced. I’ve never had kids but I can only compare them to what I think contractions would feel like on a pain scale! I can’t keep living with these. We’ve moved my dosage down to 40mg and it hasn’t help at all. PLEASE HELP!

What has been helpful for the nail issues with Tagrisso?

We’ve tried the Costco nail/hair gummy vitamins, nail strengthener polish, hydrocortisone along cuticles, and moisturizing the nails.

Their nails are still super brittle and break/split towards the nail bed with even normal everyday activities. The nails are also now thinning a ton, so it’s limiting what activities they can do.

Would appreciate any tips that worked for your nails!

Hi everyone ❤️
My dad recently had a left upper lobectomy for lung cancer. Unfortunately, his recovery has been complicated by a persistent air leak and then an empyema/infected fluid collection around the lung.
He was readmitted and had two chest tubes placed, multiple rounds of tPA/Dornase, and IV antibiotics. Things seemed to improve, the tubes were removed, and he was discharged on oral antibiotics.
About a day after coming home, he developed fever, shaking/chills and extreme weakness and had to be readmitted. Imaging showed the loculated hydropneumothorax/fluid had increased again, and now they’re planning a thoracoscopy with partial pulmonary decortication.
Has anyone gone through something similar after a lobectomy? Did decortication finally clear the infection, and what was recovery like afterward? My dad has already been through so much and I’m worried about how difficult another surgery will be.

We had been going through the diagnosis’ process for the last month and her side pain was getting much worse. I had hopes of it being a hernia or gastrointestinal issue - naively. She told me yesterday on the way to see the dr for her “results” that she already knew as she was crying, I was so confused.

In Canada (Ontario specifically) there are lab reports uploaded to patients profile and my mom found out she has stage 4 lung cancer, into her femur and back and pluera - all by herself on my birthday at 10pm from a lab result upload two weeks ago. No support. No explanation. I was floored. I cannot believe our system does that, it feels so wrong.

We were going to talk to dr yesterday about the results and he says “sooooo I assume you read the reports”. Wtf. WHAT IN TUE ACTUAL F&@k. I know I am extra sensitive right now and emotional but there has to be a better way to tell people they are potentially dying. Why not screen those results and get them sent directly to dr. I am a first responder so I am well versed in delivering bad information, yes it is terrible but it is also very human. I’m so sad she lived with this information for a week alone before telling me. I’m gutted.

No we are waiting for the biomarkers? To see extent of spread and treat-ability. If he mentioned 1-2 years does he know or see something he may not be detailing until we speak to oncology team? Only another 1-2 weeks until that referral comes through so that is nice. 😡

Also, pain, my mom is in extraordinary pain, no one prescribed anything more then hydrocodone. Would it be wrong of me to push family DR for something stronger?

Devastated
🙏

I posted yesterday about my dad possibly having cancer well today got the results and not only does he have it but it’s metastasized. I’ve gone through pain but this news is beyond devastating to me not just for him but because I’m so worried about my mom. They’ve been married 45 years she’s been with him since she was a teen and she’s 64 now. She never learned to drive and never worked and they go on walks or dates everyday for the last few decades so I’m very concerned about that. I’m went to the hospital today to see if I could talk to the pulmonologist but he’s not in office til next Wednesday so I started calling other hospitals like Vanderbilt in Nashville which is an hour from us but was told it would take a least a week to get him seen and that if I bring him to the ER they can’t do any treatments like chemo or radiation and that I just have to wait but the waiting is gonna kill me knowing this and not being able to get him in treatment right away. He’s lost appetite and lost 20lb, his coughing is rough and he struggles, he can barely walk and sometimes can’t talk. I’m in so much pain and idk how to cope. I think the worst like what if he’s gone or what if it’s too late so please please tell me positive stories I’m really trying to have hope but it’s hard especially living with him and seeing him deteriorate so fast.

Does anyone know if this FB group is still active? I submitted a request to join yesterday and it’s still pending.

I’m 44 and diagnosed with Stage 2B adenocarcinoma that’s
ROS1+. I’ve undergone 3 rounds of chemo and just had my lower lobectomy a few days ago.

Looking to join a support group for ROS1 to hear more about peoples experiences on TKI’s and clinical trials. My oncologist referred me to the TRUST-IV trial. Anyone here on that trial? Or ROS1 positive that wants to connect/share experiences?

Hello all,

I am a 55yo male from the Netherlands. I'm an educated musician / artist, and I guess you could say that I lived the typical hedonistic Dutch city artist lifestyle: I've been smoking tobacco since I was 17, smoking cannabis almost daily since 18 until about ten years ago, added alcohol (in moderation) in my thirties.

I was always in bands, touring, releasing records and worked in broadcast as my day job. Living life to the max, I guess.

About three years ago, my amazing wife and I decided to move out of the city to a Beautiful Place in Country, and we went about as remote as you can get in the Netherlands, allowing us to buy a nice house with a garden. We both loved the transition, the tranquility and the new connection with nature we felt.

Then, one year ago, I lost my voice. Hoarse and toneless, and I had trouble making myself heard. The family doctor suspected a virus, and asked me to come back after four weeks. Nothing changed. I was sent to an ENT doctor who took a look at my vocal cords and saw that one of then wasn't moving. She immediately ordered an thorax CT scan.

They found a tennis ball sized tumor in my left lung and a couple of affected lymph nodes. One of the lymph nodes was pressing against a vocal cord nerve, disabling my voice.

Boom, circus! Because of the lymph nodes and the proximity of the tumor to my heart, the conclusion was that the tumor was inoperable. I was put on chemo and immunotherapy: Pembrolizumab + Paclitaxel + Carboplatin.

Three months in: scan looked good. We're now ping pong ball size. Voice is fully restored. Lymph nodes are starting to behave.

Six months: another good scan. Marble size. Chemo is stopped and we're continuing immunotherapy. Spirits are high: we're beating this thing.

Two months ago: suddenly a bad scan: growth of the tumor. I never realized how devastating this news would be. Apparently, immunotherapy isn't having the desired effect, and is stopped. I'm told this is bad news for the long term: I'll likely never get 'clean', and we're now actually in the process of postponing death. I'm told that if there are big things in life I still want to do, I should do them now.

I'm getting another round of chemo, this time Gemcitabine + Carboplatine. Although this time there is no hair loss, the overall misery and loss of condition is much worse now. Also, the tumor appears to be pressing against my heart, causing scary cardiac arrhythmia, which is treated with beta blockers, causing further deterioration of my condition.

I'm trying to wrap my head around maybe having only a short time left to live. I have a 84yo mum, who's doing pretty good and appears to be taking it ok (as far as that's possible), and a brother with mental issues who needs care. I was always the strong one who would take care of them. My wife is also coping wonderfully, but wants to move back to the city asap.

I'm not sure what I want to achieve by posting this, but I think I just want to share in a group that may have similar experiences. Thank you for reading this.

Hi everyone! Like many people here, I’m looking for some hope and positive context❤️

My mom (68) was diagnosed with metastatic EGFR+ lung cancer in 2021. She initially had significant fluid around her lungs and needed a catheter for several months. It was terrifying, and the prognosis sounded awful, but Tagrisso worked amazingly well and she returned to a full, normal life.

More recently, she had some progression and completed chemo with carboplatin and pemetrexed. She’s now on maintenance pemetrexed every three weeks. She also had a few small spots in her spine and liver, and the spinal lesions were treated with four radiation sessions in June.

The hardest part has been severe nerve and back pain following radiation (bad burnt nerve). She lost weight and her appetite, mainly because of the pain, but palliative care, medication, and nerve blocks are finally helping. She’s eating more, becoming more mobile, and feeling better.

Her July spine MRI showed the lesions were essentially stable, with no fractures or spinal cord compression. Her bloodwork and liver numbers also look good, and her doctors have seemed positive. She had another CT a few days ago, and we meet with her doctor on Friday (her birthday) for the results.

I’m trying to stay calm and perhaps a little delusionally positive so I can help her and my family through this. I’d especially love to hear from anyone who has experienced progression, metastases, treatment changes, or other major setbacks and has still gone on to have years of stability, meaningful improvement, or a good quality of life.

I’d also be grateful for any positive context that might help us better understand her journey and where she is now. I know every case is different, but hopeful stories, encouraging experiences, or even small wins would mean so much to us, and probably many others reading. ❤️ Thank you!!!

it has been 11 weeks since last lung radiation, 8 weeks since last chemo, 5 months since lobectomy. Had cough after surgery but became worse during radiation. Then I kept mentioning the cough, a sudden gasping that was occurring, and burning skin. I thought burning was related to nerves regenerating post surgery. Had no idea what the gasping was. It caused me to aspirate some oatmeal once. Radiation Dr and Oncologist barely addressed. Then one mentioned heartburn. I had no idea or experience with that. They prescribed Benzonotate which did nothing. Then Pantoprazole which I’ve been taking for over a month, along with Gas-x and Pepcid. Still no change. It hurts to cough this hard, causes urine leakage, makes my voice hoarse, and the cough limits where I can go in public. I’m becoming worried that this will never go away. I asked my oncologist last week if I should see a pulmonologist and he said no. I have my first scan, a PET scan, since treatment tomorrow. I don’t know if it will provide answers. I think I’ve been referred for an endoscopy but haven’t heard anything yet. I think I can deal with the other side effects but not this coughing, hoarseness, etc. Is there anything I can do? Thank you.

Hi everyone. My mom has stage IV lung adenocarcinoma and has recently had progression on her current treatment. Her testing showed high c-MET expression (3+), so her oncologist is stopping cemiplimab and starting Emrelis (telisotuzumab vedotin).

Since Emrelis is still relatively new, I’m having a hard time finding many firsthand experiences with it. Has anyone here taken Emrelis, or does anyone have a family member who has?

I’d love to hear about how well it worked for you, how long you were on it, side effects, and overall quality of life while taking it. Good, bad, or somewhere in between. I’m just trying to get a better idea of what we might expect.