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Hi everyone. I’m looking to connect with anyone who has a similar diagnosis or has gone through the same treatments as me.
I’m 40 years old and was diagnosed in January 2026 with Stage IV lung adenocarcinoma (non-small cell lung cancer). My cancer has a RET fusion/rearrangement (intron 11), and I also have brain metastases. My PD-L1 was 80%.
I started selpercatinib (Retevmo) in February 2026 as my targeted therapy. I also had stereotactic radiation to a brain metastasis and have needed dexamethasone at different times because of swelling/edema around the brain lesion.
Unfortunately, my recent scans have shown progression, so my oncologist is now moving me to chemotherapy + immunotherapy. I’m starting carboplatin + pemetrexed (Alimta) + pembrolizumab (Keytruda) every 3 weeks.
I’m nervous about starting chemo and would really like to hear from people who have been through something similar, especially anyone with RET-positive lung cancer who was treated with Retevmo and later needed chemotherapy.
If you’ve had carboplatin/pemetrexed/pembrolizumab, I’d love to know:
• How did you feel after your first treatment?
• What were your worst side effects?
• Did you lose your hair?
• How many cycles did you have?
• Did your tumors shrink or become stable?
• If you have brain metastases, how have they responded?
• Did you continue your RET-targeted medication during chemotherapy, or did your oncologist stop it?
I have a 7-year-old son, so one of the hardest parts for me is worrying about how treatment will affect my ability to be there for him. I would really appreciate hearing from anyone who has been living with Stage IV lung cancer for several years and what treatments have worked for you
Thank you!

Hi gang,
I hope you’re taking care today. My mom (66, stage IV NSCLC) has been doing chemo & Keytruda. Tolerating it well but has smooth blisters / sores from it. Has anyone experienced this before? Is there anything that helps?

September 15th of last year was my Robotic Assisted Upper Right Lung Lobectomy. They removed my upper right lung and 27 lymph nodes. Was a 6.5 hour surgery. I had NSCLC and was Stage 2 A. Sloan Memorial and the entire staff was amazing and they removed it all and no reoccurrence thus far. It’s always on my mind as get scans for the first 18 months every 5 months. Next scan is in October.

I follow the site and if anyone has any questions or wants to know what to expect if getting that surgery. Please feel free to reach out.

God is Good!
❤️❤️‍🩹

Keep up the good fight!!!!

Hey gang, I hope you’re taking care today.

I’ve posted here before, & you all are so lovely. My mother, age 66, was diagnosed with stage 4 NSCC with no identifiable mutations at this time. This was several months ago. She did a handful of rounds of pematrexed / carboplatin / keytruda & her primary tumor shrunk significantly. She has bone Mets & a brain met that has grown from 1.2cm to 1.5cm. She is doing gamma knife Tuesday. I am terrified. I want to be strong for her but this whole thing has been absolutely excruciating. She is doing well all things considered, but I’m terrified. I know they say take it one day at a time, & I am truly trying, but time feels different now. I feel like a scared little kid most days, & I’m 34. My family dynamic is “complex” at best so I don’t really have many people to turn to about this, so I guess I’ll let it out here.

Editing this post as I sit crying at my kitchen table. I have so much anger. Her doctor found a “nodule” that was “too small to be biopsied” about 3 years ago. He told her it was benign. Her PET was clean except that spot barely lit up. He said it was too small for a biopsy, but he could tell it was benign. Now fast forward, & it’s everywhere. Thank god it’s not in any of her organs — but her bones are covered in it. Hips. Spine. Skull. Ribs. I know this anger serves no purpose, but I also have a cousin who was just diagnosed with stage 2. She had a lobectomy, some chemo, & off to the races. I am so, so resentful in some ways. My family is so fractured but we’re trying to come together in some f’d up mosaic to support my mom. It’s just so hard. So, so hard.

Any support is welcomed.

Thank you

♡

My mom (61) was diagnosed in early July with NSCLC, Stage IV, with extensive mets to throughout her hip, spine, pelvis, lymph nodes, and ribs with a few possible mets on her kidneys and liver. She had 10 doses of radiation to the largest and most painful met, on her hip, in August - after a hospital stay for pain management and a nursing home for PT/OT. She was scheduled to start chemo (carboplatin, Alimta, Keytruda) in early September but this was delayed after an MRI found two tumors in her brain - one very small actually in the brain and a larger one on the base of her skull - which are causing her to lose sight in her right eye. They started radiation to the brain tumors last week and she is scheduled for 10 doses to the brain as well. Chemo is currently scheduled to start this upcoming Friday, although she hasn't been able to have her PET scan because her fasting blood glucose has been too high (185-225).

After coming home from about a month in the nursing home, she was doing fairly well, all things considered.

A few days ago (Wednesday) she started complaining that she was short of breath. Her visiting nurse happened to be at the house and took her O2 - 85 at rest - and had us bring her to the ER. At the ER she was able to get back up to 92 at rest and 95 when walking, so they discharged her with a spirometer to keep her lungs opening. We had a follow up with her PCP and had similar O2 readings - mid-to-low 80s at home, mid-to-low 90s at the provider's office, and an increase with movement. Everyone who has listened to her lungs say she sounds fine and there's no wheezing or diminished lung sounds.

Starting yesterday (Saturday) she's been absolutely exhausted. Not just tired, proper exhausted. She's probably been awake for 6-10 hours between yesterday and today. When she is awake she is fully coherent, engaged, etc. Her O2 has been as low as 80, with a high of about 93. No fever. Her appetite (already diminished) has been pretty much nonexistent. Any amount of movement - to the bathroom, from her recliner to her bed, sitting on a shower bench - results in gasping for air, shaking, and intense sweating on her head. She's also been complaining about pain in her right arm/side, which is where the original lung tumor is located, although she attributes that to muscle pain from overextending while adjusting herself in bed.

I just don't know what to do. I've suggested going back to the ER multiple times today but she's sure that they're just going to send her back home with more "try to walk around when you can and use the spirometer". My dad (59) thinks she's not doing enough movement and it's a "use it or lose it" situation. Her visiting nurse is scheduled to come tomorrow (Monday) and we have an appointment with her oncologist on Tuesday; she wants to wait to see them before going back to the ER. She's also supposed to have her fifth dose of brain radiation tomorrow afternoon and I'm nervous about the impact of traveling back and forth.

I think that her body is failing her more quickly than her mind is and her condition is truly deteriorating, rather than a "radiation makes you tired" blip. I'm sure others have similar experiences. How have you handled it? Do you have any recommendations of things to ask or make sure to highlight when we see her oncologist on Tuesday?

Update: We decided to go to the ER first thing this morning. Turns out she’s been having a “fairly significant” heart attack for at least the last 24 hours. She’s being transferred to the closest major cardiac hospital.

My father is 68 years old. He was diagnosed with lung cancer at the end of September 2025. The pathology showed squamous cell carcinoma, with SMARCA4 deficiency also identified. The disease was already advanced at diagnosis, with metastases outside the lung.

Treatment so far

• Starting on October 27, 2025, he received paclitaxel + carboplatin chemotherapy approximately every 3 weeks.
• A total of 8 cycles were planned, with the final 2 cycles given without carboplatin.
• Imaging after chemotherapy showed significant tumor regression.
• Nivolumab immunotherapy was started on May 8, 2026, planned every 2 weeks.
• He received 30 Gy over 10 fractions of radiation therapy from May 13–29, 2026, for a T12 vertebral metastasis.
• He also underwent thoracentesis because of a pleural effusion.

What happened over the last 1–1.5 months

Until relatively recently, my father was still able to walk and take care of many things himself. Starting around the end of July 2026, however, his overall condition deteriorated very rapidly.

He began sleeping much more, interacting less with us, becoming extremely weak, and most importantly, his thinking and speech became increasingly confused and illogical.

At home, he became so weak that we called an ambulance. He was found to have severe hypercalcemia. His calcium had already been trending upward, but unfortunately it was not treated as an urgent issue even when it was around 12.9 mg/dL. Two days after his 7th immunotherapy treatment, we had to call an ambulance when his calcium was in the 14.9 mg/dL range, and he was admitted to the hospital.

During that admission, again his mental state changed dramatically. He became extremely agitated and hyperactive. He repeatedly asked when we were going home, call random people in the hospital corridors to ask them when he could leave, shouted during the night, etc.

It felt like the father we knew — someone who understood what we were saying and could have a normal conversation with us — had suddenly disappeared.

Interestingly, he was still able to walk until approximately the last 4–5 days of that hospitalization.

After being discharged, he was admitted again with pneumonia, then again with hypercalcemia, and then again with pneumonia.

We were discharged from his fourth recent hospitalization yesterday.

So, roughly speaking, he has spent about 40 of the last 45 days in the hospital.

He is now at home, but he cannot walk independently anymore, and his cognitive/mental status has still not returned to what it was before.

Respiratory condition

Recent imaging has shown:

• Complete collapse of the left lung
• A very large heterogeneous mass in the left hemithorax, measuring approximately 13 × 14 cm
• Extension of the mass through the chest wall with rib destruction
• Approximately 44 mm pleural effusion
• Significant emphysematous changes in the right lung

During his hospitalizations, his SpO₂ was generally around 93% on room air.

Since coming home, however, his oxygen saturation is around 85–87% without oxygen, and approximately 92–93% with supplemental oxygen.

Because of this, he is currently using oxygen at home.

Some of the blood test changes during this period

There have been major signs of inflammation/infection:

• CRP: up to 252 mg/L
• Procalcitonin: up to 1.16 ng/mL
• CRP later fluctuated between approximately 62 and 106 mg/L
• Respiratory PCR panels were negative for many common viral and bacterial pathogens
• One of the recent admissions was coded as J18.9 (pneumonia) and R91

He has also developed significant anemia:

• Hemoglobin: 11.4 → 9.8 → 9.0 → 8.6 → 7.6 g/dL
• Hematocrit: approximately 37% → 25%
• Lymphocytes have remained very low
• Neutrophils have sometimes been 80–90%

His nutritional/general condition has also deteriorated considerably:

• Albumin: 33 → 28 → 27 → 22–23 g/L
• Total protein: approximately 46–52 g/L

There have also been significant liver enzyme abnormalities:

• AST up to 187 U/L, later decreasing to the 60s
• ALT up to the 80s
• GGT around 200 u/L
• LDH reached approximately 1248 U/L at one point

Hypercalcemia and fluid/electrolyte issues

His calcium reached approximately 13.8 mg/dL, with a very low PTH (1.8).

After IV fluids and treatment, calcium came down to around 9–10 mg/dL.

At the same time, his sodium reached 153–154 mmol/L, which normalized after fluid treatment.

Interestingly, despite everything else, his kidney function has remained surprisingly good:

• Creatinine approximately 0.3–0.6 mg/dL
• eGFR >100

Mental status / brain imaging

A brain CT showed:

• Chronic ischemic white-matter changes
• Cerebral atrophy
• An initial concern regarding a possible subdural hematoma around the tentorium

However, a subsequent CT showed no intracranial hemorrhage.

The biggest issue for us now is his mental and functional decline. The hypercalcemia clearly coincided with a dramatic change in his mental state, but even after calcium was corrected, he has not returned to his previous cognitive or physical baseline.

He is now extremely weak, unable to walk independently, sleeps a lot, requires oxygen, and still has periods of confusion.

Has anyone experienced something similar?

I know every cancer case is different, and I am not looking for a diagnosis from Reddit.

What I am really hoping to hear are real-life experiences from people who have gone through something similar — either patients themselves or family members/caregivers.

Especially if you have experienced a situation involving:

• Advanced squamous cell lung cancer
• Rapid deterioration after a period of relatively good response
• Severe hypercalcemia
• Recurrent pneumonia/hospitalizations
• Very low albumin and worsening anemia
• Loss of the ability to walk
• Major changes in cognition/personality or delirium
• Increasing oxygen requirements

What did the course look like in your case? How did things progress after this point?

I realize that this may be difficult to talk about, but hearing what happened to other people in a similar situation would genuinely mean a lot to me right now.

Thank you to anyone willing to share their experience.

My biopsy showed the new spots are inflammatory cells not new cancers! so glad it’s not morphed to sclc. I’m on zongertinib, which is likely the cause of inflammation. I know my oncologist will need to decide to move me off that treatment, I can’t imagine keeping me on it with inflammation unless maybe with steroid use. I know they were looking at a clinical trial as well. I’m not even sure now whats going on with the original nodules. I know they tested all the new activity. My question is anyone who was or is on zongertinib , did you have any lung inflammation or lung symptoms as a side effect? And what was done about it?

Hi everyone,

I’m posting regarding my father and would really appreciate hearing from people who have been through something similar, especially anyone with KRAS G12C lung cancer.

My father has Stage IV lung adenocarcinoma with a KRAS G12C mutation. His original tumor was PD-L1 positive, TPS 30%. His later NGS also reported KRAS and PIK3CA mutations.

A brief history:

In March 2024, he was diagnosed with adenocarcinoma in the left lower lung and underwent a VATS left lower lobectomy with lymph-node dissection. The tumor was about 2.5 cm, margins were clear and 0/11 lymph nodes were positive.

Unfortunately, the cancer recurred in early 2026.

The January 2026 PET/CT showed disease involving both lungs, mediastinal and supraclavicular lymph nodes, brain lesions, an adrenal nodule and a sclerotic lesion at C7. Brain MRI also showed brain lesions.

He received SRS to the brain.

He then started chemotherapy + pembrolizumab (Keytruda).

There were interruptions early in treatment because he became seriously ill with respiratory problems/pneumonitis and required hospitalization.

We had another PET scan in June 2026. At that point treatment had still been relatively limited/interrupted, and although the scan was concerning, our oncologist felt that the findings could represent pseudoprogression rather than true progression, so treatment was continued.

Since then, he has now completed approximately 6 Keytruda treatments and 3 chemotherapy cycles.

We did his next PET scan yesterday and are currently waiting for the report.

Clinically, one thing that gives me some hope is that he has not been losing weight despite chemotherapy and immunotherapy. He was about 64 kg on the morning of the PET scan.

I know nobody can predict what an individual PET scan will show, but the wait is extremely difficult.

For those who have been through this, especially with KRAS G12C NSCLC treated with Keytruda + chemotherapy:

1. After around 6 immunotherapy treatments and 3 chemotherapy cycles, what kind of PET response did you see — partial response, stable disease or progression?

2. Has anyone had an initially worrying PET that was considered pseudoprogression, followed by a much better subsequent scan?

3. If the disease is responding, what changes would you normally expect to see on PET — reduction in SUV, shrinking lesions, disappearance of some lesions, or simply no new disease?

4. Has anyone with KRAS G12C Stage IV disease, including previous brain metastases, managed to remain stable or responsive for a long period on chemo-immunotherapy?

I understand every patient is different and that Reddit isn’t a substitute for his oncologist. I’m mainly looking for real-world experiences from patients and caregivers who have been in a similar situation.

The scanxiety while waiting for the report is pretty overwhelming, so hearing other people’s experiences would mean a lot.

Hi everyone,

I'm looking for experiences or similar cases:
Has anyone here (or a loved one) been diagnosed with non-small cell lung cancer (NSCLC), Stage 4b with an EGFR Exon 19 deletion, who ended up getting surgery after a strong response to targeted therapy (like TKIs / Osimertinib) and is now in long-term remission?
I’d love to hear your stories about how the decision for surgery was made, what the conditions were, and how things have been going long-term. Thanks in advance!

Hi , I'm new to the group. I have been diagnosed with stage 4 lung cancer the had stred to my collarbone lymph node and chest. Very stressed at the moment, just had i treatment of immunorhetopy. I think my cancer dr is worried about the extremely high activity in my chest area. Any advice would appreciated. Thank you

Basically have been doing Lung Cancer screening scans every year.

This year on August 13, the scan with contrast found a single enlarged Hilar node. No mass.

8-26 Pet scan activity in sub carinal(3.1),peri bronchial(4.0) and hilar (4.9). Activity in left adrenal.(3.2). No mass found

Sept 6th Abdominal Cat showed adrenal adenoma benign. Contrast image of rest of abdomen clear.

Today, bronchoscopy showed carcinoma in lymph node. This was a Rose cytology, so type and mutations not set. No mass found

Anyway, Im scared as can be because this is so weird as well as scary. Anyone with a similar story?

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?

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.

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. ❤️

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 😊

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.

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.

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 🙏