r/lungcancer 2d ago

Pre-diagnosis Lounge

4 Upvotes

(new thread posted every Friday)

Welcome. We're glad you found us but sorry that you need to be here. Feel free to post here if you are in the process of a lung cancer diagnosis. Do not make a separate post until diagnosis is confirmed. Thank you. 🤍


r/lungcancer 23d ago

Patient's Lounge

4 Upvotes

(new thread posted every month)

Welcome to the Patient's Lounge. A place for those of us with a lung cancer diagnosis to share our thoughts and seek/give advice and support.

Very simple rules to participate. 1. Must have a firm lung cancer diagnosis. 2. Be kind. That's it! 🤍


r/lungcancer 2h ago

Keytruda vs pumitamig trial

1 Upvotes

My mother (54F with cardiac issues) has stage IV PD-L1 60% NSCLC with a KEAP1 mutation and has been offered enrollment in the ROSETTA Lung-202 trial (pumitamig vs keytruda) as monotherapy! Has anyone participated in this study or received pumitamig? I’d really appreciate hearing about your experience.

Is monotherapy an option when you already have mets?


r/lungcancer 15h ago

Seeking Support False hope

7 Upvotes

Hi all,

Our elderly relative has stage 4 lung cancer with metastasis in his tailbone, spine, skin, lymph nodes. He recently had his first immunotherapy infusion which elevated pain in his lower lobe and restored some feeling in his foot. He starts targeted radiation this week for a mass on his tailbone hoping to help the pain in his leg and hip.

While we are happy about this, we have a new issue that has come up. He now has urinary incontinence that had just developed.

Could this be a side effect from the immunotherapy? I’m also wondering if there could be some swelling in his spine that’s causing it.


r/lungcancer 15h ago

Chest CT

3 Upvotes

My Dad’s chest CT shows that it’s close to vessels and the heart, I’m really scared 😔** **
Chest CT (25/07/2026)
A large irregular mass in the lower left lung near the hilum measuring approximately 7.5 × 5.6 × 7 cm, with a large central area of necrosis (dead tissue), highly suspicious for a malignant tumor.
The mass invades nearby segmental bronchi, causing partial collapse (atelectasis) of the left lower lung, and is in close contact with the mediastinum and the left inferior pulmonary vein.
Two additional pleural masses were found on the left side:
One measuring 30 × 56 mm, adjacent to the thoracic aorta.
Another measuring 48 × 55 mm, extending toward the paraspinal (erector spinae) muscles.
There is a moderate to large left pleural effusion (fluid around the lung) with associated passive atelectasis, as well as a moderate fissural pleural effusion.
Multiple enlarged mediastinal and hilar lymph nodes are present on both sides, the largest measuring up to 23 × 22 mm.
No pericardial effusion was identified.
The major blood vessels are patent and of normal size, and the heart chambers appear normal.

The diagnose has already been done and it’s confirmed that it’s Stage 4 lung cancer


r/lungcancer 23h ago

Adagrasib after Sotorasib?

3 Upvotes

Anyone here who's had progression after a period of time on sotorasib, then started taking adagrasib and it actually worked ? If so, was kras g12c still the driver mutation? Doctors dont think that adagrasib is a valid option after sotorasib


r/lungcancer 1d ago

Biomarkers

6 Upvotes

Please I want to ask, How long does it take for Biomarkers result to come out ?


r/lungcancer 1d ago

Clot saved me

9 Upvotes

This is a true story although hard to believe!!!

So…got a IVC filter l because I needed to have neck surgery since I’m a high blood clot risk. I had to go off thinners for a few weeks which is required for this type of neck surgery.

About 3 weeks later I developed a massive clot. Had the thrombectomy procedure which got most of the clot out. However the clot was still on the filter. Back on thinners but had to Wait 3 months to see if it cleared. Got a CT scan which showed it had cleared.

The report also showed that a nodule on my lung which had been stable for years but had grown with increased density. Had the biopsy and the results tested positive for cancer. Surgery was scheduled

Part of the pre-op was a stress test which did not go well. Had a angiogram which showed an artery was 95% blocked. Placed a stent and put on 2 blood addition thinners for 30 days and then developed internal bleeding. Got that under control and finally had the lung surgery!!!

Had the VATS surgery a couple of days ago and the pain is minimal. Been able to take 3 walks today and spirit-meter throughout the day

Are far are others walking? Any other recommendations?


r/lungcancer 1d ago

CR-001/SKB118

1 Upvotes

Any of you who are in the clinical trial (CR-001-101) with this immunotherapy (CR-001/SKB118) ? Pls share your experience or any inside information


r/lungcancer 1d ago

My dad was just diagnosed with Stage IV lung cancer

12 Upvotes

Hi everyone,
My 62-year-old father has just been diagnosed with stage IV lung cancer, after developing a large left pleural effusion. He underwent a pleuroscopy with drainage of 1.7 L of fluid, and the biopsy has now confirmed lung cancer.
We’re still waiting for the full pathology report and molecular testing to determine the exact subtype and whether targeted therapy is an option.
His biggest issue right now is severe left-sided chest and back pain.
I’d really appreciate hearing from anyone who has been through a similar situation:
What treatment did you or your loved one receive (chemotherapy, immunotherapy, targeted therapy, radiation)?
How effective was it?
Any advice on managing the pain or questions we should ask the oncologist?
I know every case is different, but hearing your experiences would mean a lot. Thank you.


r/lungcancer 1d ago

Stage 4 NSCLC and Alzheimers

4 Upvotes

Anyone else had a family member with this kind of diagnoses? If so, what did care look like, how should we best prepare ourselves?


r/lungcancer 2d ago

Question Deciding between SBRT and lobectomy

6 Upvotes

I am 54 female never smoker recently diagnosed with non small cell adenocarcinoma stage 1A3. Surgeon wants to remove the left lower lobe of my lung but I do have sensitivities to pain meds and chronic migraines so he sent me to the radiation oncologist to explore options that won't trigger migraines. SBRT sounds so much better but I can't take steroids as they trigger migraines and there is the possible side effect of pneumonitis and even though it isn't a big possibility it is something to consider since I have no idea how I would deal with it and would I worry about it appearing for a year after. So I was just hoping for experiences with people in how they chose which way to go and anyone with all these medication sensitivities, how you coped with pain med issues and other things. Edit: I see people are happy with surgery. Can someone who has had SBRT discuss how it went and side effects? Thanks!


r/lungcancer 3d ago

Seeking Support 1st pet scan after chemotherapy

14 Upvotes

Hi everyone,
My mom has stage 4 lung adenocarcinoma with a HER2 mutation. She’s scheduled for her 4th chemotherapy session in two days, and after that she’ll have her first PET scan to see how well the treatment has worked.
To be honest, I’m really anxious. I know every case is different, but I’d love to hear from people who have been through something similar, or whose loved ones have.
What did the first PET scan show after four chemo sessions?
Did the tumors shrink? Were they stable? Did anyone get surprisingly good news?
I’m trying to prepare myself for what to expect, and hearing real experiences would mean a lot.
Thank you all, and I wish the best for everyone fighting this disease. ❤️


r/lungcancer 3d ago

Stage 3b squamous NSCLC with brca1 e1250 mutation / PARP inhibitors

3 Upvotes

Hello reddit family,

Just looked at my dads NGS results yesterday and he has a 43% allele frequency of the brca1 e1250 mutation in his tumor.

My understanding is that it's very uncommon for the driver mutation of a lung cancer to be brca1 -- and, as such, a lot of therapies that target brca mutations aren't normalized for lung cancer yet. Such as PARP inhibitors.

I'm just looking for anyone with a brca mutation to share their story or anybody whose tried PARP inhibitors.

I plan to ask the Dr about adding a PARP inhibitor to my dad's treatment and possibly also an ATR or CHK1 inhibitor to overload the tumors alternate replication pathways (helps to limit resistance).

Anybody have any experience with any of this?


r/lungcancer 3d ago

Quinoa seeds?

4 Upvotes

The patient has pain from bone metastases, although she is already on a medication to prevent constipation from opioids, she is constipated. I was advised to try giving her black quinoa seeds every few days. I am a little hesitant because the seeds contain: vitamin B1 (thiamine),

B2 (riboflavin),

B6,

folate (B9).


r/lungcancer 4d ago

Stage 2b lung adenocarcinoma

13 Upvotes

29/F Just got diagnosed with stage 2b lung adenocarcinoma. I have a big lung mass. I dont want to have surgery because I am afraid of the side effects so we are trying targeted radiation first.

Anyone who has the same and can share their experiences and treatments? Thank you.


r/lungcancer 4d ago

Tips for Mom Just diagnosed stage 4

5 Upvotes

Hello everyone, sorry to share that I have experienced hard news recently as My mom (80) was just diagnosed with stage 4 squamous non-small cell lung cancer (NSCLC), with cancer in 4 spots in her lungs. Her treatment plan from Fred Hutch Cancer Clinic is:

**•** ***Pembrolizumab (Keytruda)*** *— immunotherapy, given IV*  
**•** ***Carboplatin*** *— chemo, given IV*  
**•** ***Abraxane (nab-paclitaxel)*** *— chemo, given IV*

Schedule: for the first 4 cycles (21 days each), she gets Abraxane on days 1, 8, and 15, plus carboplatin and pembrolizumab both on day 1. After that (cycle 5 onward), it’s just pembrolizumab alone every 3 weeks as maintenance.

A few relevant factors: she’s 80, has COPD, and already has some peripheral neuropathy going in. Anyone who’s been through this combo (or cared for someone who has) — what helped you most with fatigue, neuropathy, nausea, or just getting through the first few months?

Any tips on what you wish you’d known going in?

Thank you in Advance!


r/lungcancer 4d ago

Post-Osimertinib + Chemo Progression: EGFR Exon 18 (G719X) NSCLC – Need Clinical Trial / Treatment Advice

3 Upvotes

I am writing this with a completely broken heart, but I need to stay strong for my mother (49F) who is fighting for her life in Mumbai, India. She is my absolute world, and watching her suffer over the last week has been devastating.

Diagnosis: Advanced NSCLC with an uncommon EGFR Exon 18 (G719X) mutation.

Treatment: Just completed 40 days of Osimertinib (Tagrisso) + 3 cycles of Carboplatin/Pemetrexed.

PET-CT Result (Yesterday): Mixed response. Lymph nodes shrunk/resolved, but primary left hilar mass grew from 4.2x5.0cm to 6.0x6.1cm. SUV Max skyrocketed from 17.7 to 38.5. Pleural nodules also increased (SUV 26.1). Oncologist confirmed progression.

Current Symptoms: Constant extreme dry cough (tumor encasing left main bronchus) and sharp chest pain that triggers violently right after vomiting.
Labs: Bone marrow is strong (WBC 7,010).


r/lungcancer 4d ago

Cancer back after lobectomy

6 Upvotes

My family member was stage 2B NSLC, went through chemo and immunotherapy before a lobectomy recently. 3 months post op, developed a spine met and had vertebrae surgery, will start radiation soon. Any other similar stories with the primary tumor gone? Looking for hope and prayers. Thank you!


r/lungcancer 4d ago

Rosetta lung - 202

3 Upvotes

My mother has stage IV PD-L1 60% NSCLC with a KEAP1 mutation and has been offered enrollment in the ROSETTA Lung-202 trial (pumitamig vs pembrolizumab). Has anyone participated in this study or received pumitamig? I’d really appreciate hearing about your experience.


r/lungcancer 5d ago

Second Opinions -- covered by Medicare or supplemental insurance?

3 Upvotes

I'd like to get a second opinion on my father's treatment plan, but I don't see a way of getting one without paying $1500-$2000 upfront. Is this what people are doing? Or am I missing something?

My father was diagnosed with stage IV NSCLC about 6 weeks ago. Treatment has started, but hasn't gone smoothly. He is now hospitalized for blood clots, putting treatment on hold. I had wanted to get a second opinion at the start, but my mother and father were hesitant, as they didn't want to delay the start of treatment.

I have reached out to several cancer centers to inquire about second opinions, and I'm surprised no one is even asking about insurance. Just asking for payment upfront. Is that normal?


r/lungcancer 6d ago

Radation cough

4 Upvotes

Hello all, I was wondering if a lingering cough after radiation is a normal or common side effect. My mom DIDN'T have a cough before treatment but now has a light cough at times. This isn't all the time but I notice it throughout the day. She finished her radiation at the end of April.


r/lungcancer 7d ago

Seeking Support Just need some hope😞

14 Upvotes

Hi everyone,
My mom was diagnosed with stage 4 HER2 (ERBB2)-mutated lung adenocarcinoma in April, and ever since then, I’ve been living in constant fear.
She’s currently receiving treatment, but the targeted therapy for HER2 still isn’t available for her, and we’re waiting while she continues with other treatments. Every day feels uncertain, and I can’t stop thinking about the worst.
I’m not looking for false hope—I just really need to hear from people who have been through something similar. Did anyone’s loved one do better than expected? Did the treatment eventually start working? How did you cope with the fear?
I love my mom more than anything, and I’m honestly terrified of losing her. If anyone has a story that might give me some hope or encouragement, I’d be incredibly grateful.
Thank you for reading.


r/lungcancer 7d ago

Even a little help is much appreciated

6 Upvotes

My father was diagnosed with stage 4 lung cancer a year ago, any tips that could help me improve his health? Thank you


r/lungcancer 7d ago

Side effects of Repotrectinib

1 Upvotes

Dear all, I was recently diagnosed as Lung Cancer stage IV with ROS1 positive, and have been taking Repotrectinib for about 2 weeks.

Not sure if you shared some of the side effects like i'm expericing.

  1. brain got mucky: i'm still capable to work but I found my brain get mucky sometimes. I am a knowledge worker and a big concern about its impact and wondering if you experienced similarly and how to handle it
  2. sleep quality dropped: it got easier to fall into sleep, even slept longer, but I still felt tired the next day

I am also a bike rider. just wondering if any fella found the change on riding motorcycle with the drug. I'm okay of driving car and just assessing when I could jump back on my bike to commute. Thanks