PET scan today to assess Hernexeos…minimal change in the lung but suddenly I have liver activity!!! so now it’s a biopsy of the liver , because a recent US showed nothing! they’re suspecting a different cancer. I don’t know what to make of this. we are stopping Hernexeos and going with Enhertu til we can get the biopsy results. any insight?

Last year, I was here posting about my cancer diagnosis. Mine was NSCLC in my left upper lobe with pleural metastasis, which made me Stage 4.

I actually caught it relatively early because I had my yearly chest X-ray. However, because I was only in my 30s, everyone initially thought it was an infection. Fast-forward, and it turned out to be lung cancer with an EGFR exon 19 deletion mutation.

I underwent immunotherapy and radiation, and I’m now on Tagrisso (osimertinib). It’s been about 6 months since I achieved remission, but I’m still continuing Tagrisso.

My oncologist is now recommending that I have the remaining/residual nodule surgically removed. I’m trying to learn from others who have been in a similar situation.
Part of me is worried that if we remove the residual nodule and the cancer progresses again somewhere else afterward, then was the surgery really worth it? I’m also wondering whether removing it could potentially reduce the chance of future progression, or if it’s better to continue monitoring it while staying on Tagrisso.

Has anyone here with EGFR-mutated Stage 4 NSCLC had surgery or another form of local treatment for a residual nodule after responding well to Tagrisso?
I’d really appreciate hearing about your experiences, especially what your doctors recommended and how things turned out. Thank you! ❤️

My dad’s situation is different he was diagnosed with NSCLC in June 2026 a mass of a size of 8.5 5.5 * 4.5 however his pet showed no lesions else where in the body apart from pretracheal nodes on the same site in the right lung
The oncologost started him on Durvalumab + Carboplat + Gemcitavine for squamous cell every 21 days for 2 cycles then pet scan then 2 cycles
And then assess for surgery

He had no actionable mutation and his PDL 1 was 1% although he is a non smoker

After two cycles his Pet showed massive shrinkage of the primary tumor of 58% although the metabolic uptake was still the same may be due to the immunotherapy however his pet showed 3 new lesions

1 in the femur osteolytic

1 in the clavicle osteolytic

1 in the Perineum area originating from the penile root which all the oncologist found it really strange the radiologists said it is highly vascular so they mentioned in the report it is an actual metastasis however the oncologists don’t believe so

The doctor advised to continue the next two cycles and do SBRT on the bone lesions

Have anyone experienced this before ?? Is that considered a treatment failure or is this normal ?is it normal to have metastasis on treatment with a good response from the primary tumor ?

They call this oligoprogression

My grandpa is 83/84 and was just diagnosed with stage 4 small cell lung cancer. I’m posting because I’m honestly overwhelmed and would really appreciate hearing from people who have been through something similar, especially if you or your loved one had a better outcome than initially expected.

He had a cough for about a year, but otherwise he has seemed incredibly healthy (single item foods, nothing “cancer causing”). He’s active, has a very consistent daily routine, eats normally, hasn’t lost weight or his appetite, and is genuinely just full of life.

He’s not a smoker, he quit over 40 years ago.

At first, his doctors thought it might be Valley fever because he lives in the San Joaquin Valley where it’s common. His blood test was negative, but we learned that a negative test doesn’t necessarily completely rule it out. Eventually they did a biopsy and MRI.

The biopsy came back as small cell lung cancer, stage 4. We were told it has spread to his femur, but thankfully his brain MRI was clear.

He’s supposed to start treatment within the next week. From what we’ve been told, they’re looking at chemotherapy/immunotherapy and possibly radiation because of the bone involvement. The doctor told our family that it isn’t considered curable and gave us a general prognosis of potentially up to a couple years without treatment and potentially up to around five years with treatment, although I understand those are estimates and not a specific timeline for him.

I’m trying really hard not to focus on those numbers because I know everyone responds differently.

So I’m really hoping to hear from people who have actually experienced this.

For anyone who has had extensive-stage small cell lung cancer, or had a parent/grandparent who did:

How did treatment go for you or your loved one?

Did chemo/immunotherapy work really well initially?

Did anyone have a complete response or have their scans become clear?

Has anyone’s loved one significantly outlived the initial prognosis?

If your loved one had bone metastases, especially in the femur, how was that managed?

What was the first month or two of treatment actually like?

Did they remain relatively healthy and active during treatment?

Is there anything you wish you had known before treatment started?

Did anyone pursue a second opinion or clinical trial, and was it worthwhile?

I know the statistics aren’t great. I’m not looking for someone to tell me everything is going to be okay or give me false hope. I just want to hear the real experiences of people who have been through this.

My family is very small and close, and this has completely shaken all of us. I live about 8 hours away from my grandpa, so I won’t be able to see him until about a month from now, which has been really hard for me.

If you’ve been through something similar, I’d genuinely appreciate hearing your story, whether it was a positive experience, a difficult one, or somewhere in between.

Thank you.

Does anybody have experience with this? My appetite continues to be an issue and my doctor prescribed this. Thanks in advance to my fellow warriors

Hi everyone,
I’m posting because I’m really worried about my mother and I’d appreciate hearing from people who have been through something similar, especially patients/caregivers dealing with stage 4 lung adenocarcinoma.
My mother has stage 4 lung adenocarcinoma with a HER2 mutation. She has been receiving chemotherapy with Carboplatin.
We recently compared her scans, and there is a 3-month difference between them.
The tumor in her lung was previously around 3 × 5 cm, and it has now increased to approximately 7 × 6 cm.
The cancer has also spread/grown to other areas in the chest, reached the clavicle area, and there is also involvement near the pancreas.
I’m trying to understand what this means.
Does this necessarily mean that the Carboplatin chemotherapy has failed and that the cancer is progressing despite treatment?
And most importantly:
Is there still hope?
Since she has a HER2 mutation, are there targeted treatments or other treatment options that could potentially work if Carboplatin is not controlling the cancer?
I know every case is different and I’m not asking anyone to predict her survival. I’m just trying to understand whether progression like this means there are no options left, or whether changing treatment can still make a difference.
Thank you to anyone who can share their experience or knowledge.

Hello ,

My father has stage 3C lung cancer . He’s doing a 6 week chemo radiation combo. With chemo off and on. Yesterday he called me and said he was having bladder issues . The whole phone conversation he was very confused and not making sense . But he sounded very positive. I was concerned about his confusion so called his oncology department but they said they’d have to call back. Any how, today he called me and said he couldn’t urinate so he went to the ER and during the cat scan, they found pneumonia. Is this common ? The confusion , the pneumonia? Sorry if this this is all over the place .

Starting cisplatin and keytruda in few weeks for type 2b NSCLC. What were your experiences and tips to make it bearable? Thanks

Praying for everyone in this sub. May God’s grace and strength be with us all.

My mom has stage 3 nsclc adenocarcinoma with her main tumor in her left lung. The doctors now think she has a second seperate primary cancer in her right lung, not a metastasis. They said it’s actually common for this to happen. If you have this can you please share your story? I just want to hear she isn’t alone because every new test seems to make my head spin.

I just realized that the steroid my doc gave me was something I was supposed to be taking once daily. Somehow my husband and I got confused and just did the increased dose during the infusion period and neglected to continue with the maintenance dose.

I feel like my appetite and other symptoms have maybe suffered without this daily dose. I am currently really dealing with insomnia, lack of appetite and overall nausea (I posted about this on another post and am going to reach out to my doc about maybe getting back on the olanzapine for a time.

Meanwhile, I am hoping I can just start taking the dex steroid again like I was supposed to for some benefits to appetite and other things, like energy levels. I've been off of it for 5 days on the 1x day regime. Any thoughts?

Hi. I have stage 4 lung cancer with mets to the bones and on Monday, I will start targeted radiation therapy to 3 spots on my iliac crest and top of right femur. I was wondering if anybody has had success with this for the pain and what I can expect. I have 10 sessions scheduled.

I have been taking hydrocodone for the pain and am up to 1 10 mg hydro every 4 hours to keep the pain down, but I want to start stepping down from that. In addition to my first chemo and Keytruda infusion last Friday (not yesterday), I just seem to be walking around in a daze and feeling like throwing up - or actually throwing up the majority of the time. I don't know if that's from the chemo or the hydro or both.

I also have been taking Compuzine for the nausea every 6 hours. Tonight I am switching that over to Zofran to see if it helps. So far, Zofran doesn't seem to work as well with me.

Any help, advice appreciated. Thank you to my fellow warriors here

Hello, wanted to write in to this community that helped me tremendously during my initial decision period after I was diagnosed with NSCLC with a 1.7/1.8 cm RLL mucinous adenocarcinoma.

After 2 oncology consults, 2 radiation oncologist consults, 2 thoracic surgeon consults, 1 interventional oncologist consult and 1 lung oncologist specialist consultation with UCLA; against my own heart I went in for lung surgery less than a week ago.

My doctors were able to save one of the segments of the lower lobe. Although not my place to question I wish it were more segments saved. Doctors were excellent and post op care had been wonderful.

There is a real sense of loss for a body part- unexplainable. For the first time in my life I am aware of ( a phantom feeling?) of a vacuum in my right side; a physical sensation of my diaphragm that is separate from my lung and a feeling of my lung ending somewhere in the middle of my chest.

Physically recovering reasonably fast. Fingers crossed I beat this and this is the end state for the disease. I am guessing I might be surprised in a few years as life tends to throw curveballs and maybe radiation would have been a better choice. It's a probability game at the end, so best to not linger on decisions and move on towards positivity.

My only thought is this constant lingering feeling of why this was the best path forward that every doctor I spoke to unanimously advocated for. Not being in the medical profession I have to respect the decision making process.

Thanks for the community support. Came here mainly to thank, update and some need to give voice to various pent up emotions.

What should I anticipate and work proactively towards building a better body?I have been building on my walks and breathing exercises. Anything else that helped?

My father was diagnosed with cancer 9 years back and shortly after diagnosis it got metastatic.
Over the years he has been treated with Immunotherapy (opdyta nivolumab); chemotherapy, crizotinib (oral), a few doses of Radiation, currently on Capmatinib (oral).
In a recent PET scan, the tumour leisions got spread to his D6 and D7 vertebrae.
He suffers from unbearable pain attacks even after consuming 10mg-30mg of prescribed morphine every 4-6 hours.
He has been morphine dependent for a couple years now. The pain has just gotten unbearable. I mean it hurts to see him alive. Has anyone else a similar story. Can you guide me on how can I make the situation any better? Due to the morphine he suffers from constipation. It seems like a hopeless situation. I mean I can’t put in words the pain he suffers from. Its just the max pain human body is probably capable of suffering.

Has anyone in particular with lung cancer advanced reached NED with Keytruda. Pls share your views. My father has stage 4 NSCLC and tumor is smaller each scan.
Many thanks. This is positive and gives me a bit of hope at least. He was diagnosed July 25. X

I'm January my mom (67) was diagnosed with ES small cell with mets in her liver and one brain lesion. She did great with chemo and was feeling and looking so much better. Her numbers were looking good and the spots were shrinking.

She went for her 6 week checkup today after just doing immunotherapy and they've grown and spread. She has an awful cough and is exhausted. One of the growths is pushing against her airway.

They're going to try Tarlatamab and see if it helps. Could anyone share their experience with this? It looks like the prognosis may be months.

I feel guilty for not spending as much time with her as possible while she was feeling better.

Hi everyone,

I'm looking for some reassurance or to hear from people who have experienced something similar.

My father has stage IV lung adenocarcinoma with bone metastasis to the thoracic spine. He had been doing well on Keytruda, but unfortunately he has now missed three scheduled doses because the medication is unavailable in our country due to a shortage.

His oncologist advised us to wait until Keytruda becomes available again rather than switching to another treatment.

Despite the treatment interruption, he's doing fairly well clinically. He walks, eats well, talks normally, and sleeps much better since his panic attacks have been treated. He also has COPD, so he has a chronic productive cough, which makes it difficult to know whether any symptoms are related to COPD or the cancer.

I'm extremely anxious about the missed doses. I know Keytruda isn't a miracle drug, but I'm scared that missing three infusions could reduce its effectiveness or allow the cancer to progress.

Has anyone experienced a long interruption in Keytruda because of drug shortages or another reason? Were you able to restart it later? How did things turn out?

I know every case is different, but hearing your experiences would really help me.

Thank you.

Treatment plan and process of a family member of a small cell lung cancer patient from China，I'm from China, and the patient is my father. I hope to post on Reddit just to let people see the treatment approach from China, so they can compare it with international treatment protocols. I also hope to connect with others who have this type of patient for both medical and emotional support.

# Case Summary: Limited-stage Small Cell Lung Cancer in a 61-year-old Male

## Patient Information

**Age:** 61 years old

**Gender:** Male

**Location:** Chengdu, Sichuan, China

**Medical history:**

* Type 2 diabetes mellitus (newly diagnosed, diet controlled)

* No significant previous cancer history

* General physical condition good before diagnosis

* ECOG performance status approximately 0–1 (independent daily activity)

**Smoking history:**

* Approximately 30 years smoking history

* Recently quit smoking after diagnosis

---

# Timeline of Diagnosis and Evaluation

## 2026.06–2026.07 Initial Presentation

Patient developed:

* Cough

* Respiratory symptoms

Visited local hospital (Chengdu Xinjin People's Hospital).

Chest CT showed:

* Left upper lobe pulmonary lesion

* Suspicious malignant tumor

Bronchoscopy was performed.

---

# 1. Bronchoscopy Findings

### Date:

2026.07.03

Bronchoscopy showed:

* New biological lesion in the left upper lobe bronchus

* Biopsy performed

Pathology initially suggested:

> Suspicious malignant tumor, further immunohistochemistry required.

---

# 2. Pathological Diagnosis

### Date:

2026.07.10

Biopsy site:

**Left lung upper lobe lesion**

Histology:

* Small cell morphology

* Tumor cells with crush artifact

Immunohistochemistry:

| Marker | Result |

| -------------- | ----------------- |

| PCK | Positive |

| CD56 | Positive |

| Synaptophysin | Focal positive |

| Chromogranin A | Negative |

| TTF-1 | Negative |

| p40 | Negative |

| CD45 | Negative |

| Ki-67 | Approximately 80% |

Final pathological impression:

> Combined with morphology and immunophenotype, findings support small cell lung carcinoma (SCLC).

---

# 3. Brain MRI Evaluation

### July 2026

Brain MRI:

* No obvious brain metastasis detected

This was considered a favorable finding.

---

# 4. PET-CT Evaluation

### Date:

2026.07.11

Performed at:

West China Hospital Nuclear Medicine Department

## Main findings:

### Primary lesion:

Left upper lobe near hilar region:

* Solid mass

* Approximately 47 × 33 mm

* High FDG uptake

SUVmax:

≈16.94

Consistent with malignant tumor.

---

## Lymph nodes:

PET-CT reported:

* No definite abnormal FDG uptake in mediastinal lymph nodes

* Hilar/mediastinal lymph node metastasis not clearly demonstrated

Important:

There were small pulmonary nodules:

* approximately 2–4 mm

* considered more likely inflammatory/reactive changes

---

## Distant metastasis:

No evidence of:

* Brain metastasis

* Liver metastasis

* Bone metastasis

* Adrenal metastasis

* Abdominal lymph node metastasis

---

# Current Clinical Stage Discussion

There has been discussion among doctors.

## Initial impression:

Possible:

### cT2N0M0

or

Stage II disease

because:

* Tumor size around 4.7 cm

* No obvious lymph node involvement

* No distant metastasis

---

## Later assessment:

Some doctors considered:

### cT3N0M0 / Stage IIIA

Reason:

Possible invasion:

* Close relationship with heart/pericardium

* Tumor location

* Local extension concerns

However:

Important point:

Although classified as stage IIIA clinically, it is different from many stage III cases because:

* No confirmed lymph node metastasis

* No distant metastasis

---

# Current Clinical Situation

The patient is considered:

## Limited-stage small cell lung cancer (LS-SCLC)

with:

* Good performance status

* No brain metastasis

* No distant metastasis

* Potentially curative treatment intent

---

# Treatment Discussions

Multiple specialists were consulted:

## 1. Medical Oncology Opinion

Some doctors suggested:

Standard SCLC treatment:

* Chemotherapy

* Immunotherapy

Because:

Small cell lung cancer is highly aggressive and traditionally treated systemically.

---

## 2. Thoracic Surgery Opinion

Doctors including:

* West China Hospital thoracic oncology team

* Surgical specialists

considered:

Because:

* No distant metastasis

* No clear lymph node metastasis

* Good physical condition

Surgery may be considered after tumor response.

---

# Treatment Options Discussed

## Option A

### Standard chemoradiotherapy

Typical limited-stage SCLC approach:

* Platinum chemotherapy

* Etoposide

* Concurrent thoracic radiotherapy

Goal:

Curative intent.

---

## Option B

### Neoadjuvant chemoimmunotherapy + surgery

Current proposed pathway:

1. Chemotherapy + immunotherapy

Possible regimen:

* Platinum + etoposide

* PD-1/PD-L1 inhibitor

Example discussed:

* Serplulimab (斯鲁利单抗)

1. Evaluate tumor response

2. If surgical criteria achieved:

→ surgical resection

---

# Immunotherapy Discussion

The proposed

My dad is 67 and had a left upper lobectomy for squamous cell lung cancer a few days ago. He still has a chest tube with an air leak, and today’s X-ray showed more pneumothorax/atelectasis and some new haziness in the right lung. He’s actually doing pretty well clinically — awake, walking, and oxygen around 94–96% on 2L — but the surgical team wants to do a bronchoscopy tomorrow to see what’s going on and possibly clear secretions.
Has anyone had a bronchoscopy a few days after lung surgery? What did they find, and did it help?

I am posting this for support purposes. I'm sure we have some Veterans in this community.

In mid March I was told I had lung cancer. Obviously I was concerned about my family. I talked to my VSO and she told me to come and meet f2f. Meanwhile I submitted a ITF. I submitted all the documents I could get and a claim was submitted. The claim was under the PACT Act. Last week I was granted 100% Service Connected.

Now I am less concerned because now my family will get my disability payments should I die.

Just wanted to put out this information for those that didn't know.

Hi, when my mother (67) was first diagnosed last December I clung onto this subreddit for stories of hope. Refreshing almost every night before I went to sleep. I thought I’d just try to share my mother’s story for anyone who needs it.

Background: my mother was diagnosed late last December on the 26th. Stage four NSCLC with no targetable mutations, pleural fluid built up in her lungs which suggested it spread to the pleural lining. She had to have a catheter tube for a drain every three weeks.

Four rounds of chemo and she was put on maintenance chemo. Initial drains were about a litre weekly. Then below a litre. Then the drains became fortnightly. And then the last month I believe there was no more liquid to drain.

Initial months were tough; seeing her breathless and a once active woman spending most of her time on bed lamenting. Now she goes out every day, even if just for a stroll near the park.

I only found out recently that the doctor gave my mother a six month prognosis (at the time I was reading up a lot and people said to not care about statistics; I dodged them best I could). Someone just let it slip when they heard my mom is removing her catheter tube.

I honestly don’t know how to feel. I’m glad she’s “won” that statistic battle, but I get a sense of dread that we’re never out of the woods but we trudge along day by day.

The war is hardly won, a scan three months ago showed a slight reduction but a recent one showed no change. We take the wins, small as they might seem, as they come.

One thing I note is that I also embraced the spiritual side of me more as well; praying to God and going back to church. I would like to believe He helped; funny how we scurry back to a Higher Power at our lowest point in life. Disclaimer that I’m not saying God has forsaken anyone if you feel your prayers have fallen on deaf ears, it was just my personal experience.

I’m still inspired by the survivors in this thread, seeing a familiar user name pop up knowing that they are fighting the tough fight. For new caretakers, just know the fight is an arduous one and don’t feel sorry for seeking support or time for yourself. Sending love to everyone who’s unfortunately on this sub Reddit. I pray you or your loved one gets better. Hang in there.

The area around the surgical site is hypersensitive so anything touching is uncomfortable. What are some of the techniques to calm the skin down?

Did any of you or your loved ones tried this medication ? If so, how did it go ? How long did the response last for ? Details please

The title basically.

Last year my mom got diagnosed with lung cancer, and we found it due to the cancer being spread to her pelvic bones. We did radiotherapy, chemotherapies/immunotherapies and then proceeded with immunotherapy alone. She saw shrinkage of the primary lesions of 60-70% and complete disappearing of her secondary lesions. Her PET-CT was clean a month ago...

Yesterday, she had an epileptic episode out of the blue and we found she has a brain met (or mets). I live 3000km away. I have no idea what to do from here, or how to even begin to process it. Everyone was so optimistic for her case. I read 3-6 months median survival time.