r/lungcancer

Yesterday, my dad's case worker and doctors informed me that they cannot do any treatments due to his high oxygen and his frailty. He stopped eating over a week ago and then stopped taking some of his meds. So they talked about hospice and started making calls to find a bed.

This morning I was bombarded with calls letting me know they found a bed in a small 3 patient hospice house that the hospital sends their hospice to. So I signed off on it, met the staff, and got him settled in. The staff are amazing and the house is super nice and homey. He seems to like it and he's so glad to be out of the hospital.

This has all gone by so fast. Only 2 weeks ago he called the ambulance and was in the ICU. He has the pleurx drain tube and they got his oxygen down to i think 6L and off of the high flow machine. His only pain seems to be from a bed sore on his bottom. I offered to get him a hamburger or snoball if he was up for it, but he's just not hungry.

Luckily he's still lucid and able to give me info for all of his accounts, since I'm his POA, which is great. I'm taking advantage of that and doing as much as possible to settle accounts, cancel unnecessary subscriptions, handle his car title, and get his last wishes. Once I get all of this straight then I can look for an affordable cremation and see if we want to rent a venue or do something at a family's home to save cash.

I'm mentally exhausted. The social worker let me know there are support groups for cancer and hospice if I want to join virtually since I live over 30 minutes away and have to handle my own health issues. I think I'm gonna need to take that offer. This is so heavy man.

Just looking some words of comfort from anyone who had an experience related to a vats surgery.

This is my first ever surgery. I'm very afraid of that tiny percentage of chances of things that could go wrong.

I do have some odds in favor: I'm 40, good diet, quit smoking 6 months ago, run at least 3 times a week, excercise, my lab analysis are great. I do have diagnosed anxiety and I probably shouldn't be here asking comfort from strangers but here I am.

Maybe your words could help somebody else reading this.

I wish you all the best, and thank you ❤️

Hey all,

My mom was recently diagnosed with lung cancer this week after 2 long months of testing/ collecting data. Here's the info they gave me for reference:

- stage 4: lumbar (bone), lymph nodes etc)

- type: NSCLC, Adenocarcinoa

- treatment plan: Systematic - chemo and immunotherapy, then radiation for her back/side: most pain here

- mutations: KRAS p.G12C varient

- PDL-1: blood sent off, this is still TBD.

- awaiting brain MRI appointment to determine if any cancer is here, but doctor is hopeful

She's starting treatment next week (chemo/immune every three weeks, and radiation for side) I'm seeking support from this community on any tips to help make her the most comfortable during treatment. One of my friend's told me ice popsicles help in case she has intense nausea.

I'm feeling very stressed out about the unknown about how she will respond to treatment, but trying to be hopeful in making sure she has everything she needs now that we have a firm diagnosis. Any advice, resource direction, personal anecdotes from your own experience caring for a loved one, or going through it yourself would be greatly appreciated 🙏

Thank you for your time and help.

mom is on krazati. radiation is apparently not an option based on lymph nodes, a pleural effusion, and now cancer has spread to pelvis. these doctors are very bad at sharing bad news and I’m worried they aren’t being candid. if the krazati turns out not to be the right fit, do they really do chemo AFTER? I thought it was typically krazati when chemo doesn’t work /isn’t an option.

Hi everyone,

I’m posting for my father and would really appreciate honest feedback from people who have been through something similar.

He is 76. He has stage IV non-small cell lung cancer, diagnosed in early 2025. He initially had carboplatin/paclitaxel + radiotherapy, then durvalumab, and later progressed with liver and bone metastases. He then started carboplatin + pemetrexed + pembrolizumab, but after 2 cycles he had very severe toxicity: pancytopenia/aplasia, sepsis, ICU stay, transfusions, and treatment was stopped.

He has stage IV NSCLC, likely adenocarcinoma / initially reported as NSCLC-NOS, PD-L1 1%, no targetable mutation found

The difficult part is that no scan was done after those 2 cycles, so we don’t actually know whether the chemo helped the cancer or not. His oncologist has now decided no more chemotherapy and he is currently on home palliative care, mainly symptom control.

What makes this hard to process is that clinically he seems better right now:

- eating fairly well

- sleeping well

- walking on his own

- only mild cough

- stable for about a month

His latest blood test also looked much better hematologically:

- WBC back to normal range

- neutrophils back up

- platelets back up

- hemoglobin still low but much better than before

So my questions are:

1. Has anyone seen treatment restarted after a major crash like this, once blood counts and general condition improved?

2. Would you push for a CT/PET re-evaluation, since there was never any imaging after the 2 chemo cycles?

3. If an oncologist says “no more treatment,” did anyone here still get a second opinion that changed the plan?

4. For people with experience in palliative care: does “palliative only” always mean the cancer treatment chapter is truly closed, or can it sometimes be reconsidered later?

I know nobody can give medical advice for my father specifically. I’m just trying to understand whether this sounds truly final, or whether there may still be a window to re-evaluate if he stays stable.

Thank you.

My mom is MISERABLE. All infections have been ruled out and she has tried over half a dozen remedies and has NO relief. She can barely walk from the discomfort- itching, bleeding, broken skin, burning that worsens with urination. There has to be SOMEthing. HELP.

My mother lives in Algeria and has stage IV EGFR-mutated lung cancer (exon 19 deletion). She was previously treated with Iressa/gefitinib, but the cancer developed resistance and her oncologist prescribed Tagrisso/osimertinib 80 mg.

We currently have the prescription and medical reports scanned, but Tagrisso is not accessible for us in Algeria.

I am trying to find realistic and legitimate ways to obtain the treatment from another country.

If anyone has experience with:

• obtaining Tagrisso/osimertinib across borders
• international oncology consultations
• patient assistance programs
• generic osimertinib
• legally transporting cancer medication

I would deeply appreciate any guidance.

My mother is currently very weak and cannot travel easily, so remote consultations or family pickup routes would help most.

Thank you.

Hi everyone,

I’m looking for advice or experiences from anyone dealing with HER2-positive non-small cell lung cancer, particularly HER2 amplification rather than HER2 mutation.

My dad has advanced NSCLC with HER2 amplification/overexpression and unfortunately has not responded to chemotherapy or immunotherapy.

He has also developed brain metastases and there is suspected prostate cancer as well, which we have been told makes him ineligible for most clinical trials.

His oncologists have now told us there are no further treatment options available on the NHS.

What makes this especially difficult is that my dad is otherwise very healthy and fit. He has always been an avid runner and remains strong despite everything happening.

We have been trying to explore targeted therapies, compassionate use, private access and clinical trials, but keep hitting the same wall because most of the newer HER2 drugs appear to only be approved or studied for HER2 mutations, not HER2 amplification.

Access pathways seem incredibly limited for amplification patients compared to mutation patients.

Has anyone:
- Successfully accessed HER2-targeted treatment for HER2 amplification NSCLC?
- Gone abroad for treatment?
- Had any success with compassionate use programs?
- Found any private oncologists in the UK or abroad willing to take on complex cases without insurance?

At this point we are just trying to make sure we have explored every possible avenue.

For context, we are in the UK and my dad does not have private medical insurance. We have recently started trying to raise funds because we know private treatment will likely be extremely expensive, but honestly we don’t even know where to go or who may be willing to help.

Any advice or shared experiences would genuinely mean a lot.

Thank you 🙏🏽

hi all. it’s tough writing this but my every-3-months scans showed activity on the last one (PETscan) I’ve had chemo, surgery and maintenance since Oct 2025. I felt great, labs were good. The active spots are a lymph node and a tiny nodule. we decided to stop infusions and start Hernexeos. anyone have any experience with this? I just took first dose today….just wondering when side effects started for you and anything else you can share: tips, wisdom, warnings, etc. TIA

Hey everyone,

My mother was diagnosed with squamous cell carcinoma in her left upper lobe in January 2026. All her lymph nodes are clean, so its just the tumor, with a size of 8cmx5cm. At first she had neo adjuvant therapy consisting of 3x chemo + 3x immunotherapy to increase the chance of surgical resection.

13th of May last week she went for surgery and when they went inside they couldnt remove it because it has grown into her pericard and her pulmonary artery. Obviously this has been a huge disappointment and blow to us as it has been a rough ride already and now she has to recover from a surgery that didnt do anything for her.

The next plan is that she is getting 30x IMRT with chemo, still with curative intent. Does anyone here have experience with a similar journey?, and maybe can give us some hope that it can still have a postive outcome? We are obviously very stressed out about it, because we know squamous cell doesnt have to much options left with target targeted therapy not being an option.

Thanks for reading!!

My dad, 73, went into the hospital by ambulance over a week ago for breathing trouble. I had gone no contact with him 3 years ago for a couple of reasons, but after both his sister and brother left voicemails saying he was in the ICU, I decided to step up and help take care of him. My mother separated from him 7 years ago, my brother doesnt like him, so its on me, my halfsister, and his sister.

I talked to the oncologist and pulmonologist, and also saw the scans of his organs. He has been diagnosed with advanced stage 4 lung cancer and also has some growths in his liver. The tumor is very large and they had to put in a pleural drain tube due to the fluid coming back repeatedly. It is non small cell, he told me the specific type but I forgot what it was called, it was a big word I know that much.

Oncologist said he cant do any treatment until his oxygen use gets lowered from 70% to 40%. he wants to do some radiation to see if that gets the tumor off of the airway. While my dad is breathing a little better at the moment, he cant get out of the bed at all. They tried to stand him up and he immediately got light headed and dizzy and almost passed out, his oxygen also dipped quite a bit. He isnt eating and seems confused at times.

The doctor said with no treatment from him, he has maybe 4 months. If he can do radiation, then hopefully immunotherapy, he could live about 12-16 months.

Right now, it really doesn't look good. I had a mobile notary come to his room while he was coherent so am now his medical and financial POA. Tomorrow, I'm going up there to try and force him to eat some pudding or something on his meal tray, because he hasn't had any food for 10 days, only having water/ice and IV fluids. He also seems to be confusing dreams with reality, which concerns me. He is very frail for 73, and I kinda expect this bc he has never tried to take care of his health. Always smoked, always ate unhealthy, drank when i was younger, always sat around and watched TV.

Is it silly to remain hopeful that he will strong enough for treatments or should I be quicker with making arrangements as far as his finances and property goes?

EGFR, stage 4.

Did my 4 rounds of chemo (cisplatin & pemetrexed) with the last round being 4 weeks ago. Hair got thinner but mostly there, but I’m still losing hair. When is hair loss meant to stop?

My indian mom (52F) has stage 4 lung adenocarcinoma. The cancer started in her lungs and has spread to her spine/vertebrae and bones. She’s currently struggling a lot with breathing issues, mucus buildup, weakness, and low stamina.

Recent chest X-rays show a large abnormal area/mass in the right lung along with patchy lower lung changes. She often needs to sit leaning forward because it helps her breathe and clear mucus better.

We recently got her liquid biopsy/molecular testing results back. Mutations found include:

\- TP53 (M133T and D41Vfs\*3)

\- ATM C728\*

\- KEAP1 Y584\*

\- RAF1 N262K

\- CTNNB1 S33C

TMB was elevated at 17.08 mut/Mb.

The report said there are no standard FDA-approved targeted therapies for the TP53 mutations specifically. From what I understand, the elevated TMB may mean immunotherapy could still help, but the KEAP1 mutation may make the cancer more aggressive or resistant.

She does NOT appear to have EGFR/ALK/ROS1-type mutations.

We are trying to figure out:

\- Best treatment options at this stage

\- Experiences with immunotherapy in TP53 + KEAP1 lung cancer

\- Whether ATM mutation opens any meaningful options

\- Whether anyone has had success with clinical trials for TP53 mutations

\- Best hospitals/doctors internationally or in India for advanced lung adenocarcinoma cases like this

\- How to improve performance status/strength enough to tolerate treatment better

Most important thing for us right now is maximizing both survival and quality of life.

If anyone has dealt with a similar mutation profile or advanced lung adenocarcinoma case, I’d really appreciate hearing what helped, what didn’t, and what questions we should be asking the oncologists.

Recently diagnosed with lung cancer non specific mucous adenocarcinoma with two nodules 1.8 cm and .5 cm. Am researching options before I meet my oncologist. The nurse navigator said path is likely to be wedge surgery followed by chemo. I am trying to educate myself on alternatives before I meet the oncologist. Any suggestions? I am reading here about SBRT. Will research that. I also have online half-baked knowledge about PDT and proton radiation therapy. Has anyone encountered these options. Obviously will check with my onco and get a second opinion but looking for wisdom from the group.

(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. 🤍

Mom was just diagnosed with brain mets in the frontal area. All I know so far is that we’re waiting on an appointment with radiology to discuss next steps so I’d love all the info, the good, the bad, and the ugly! Thank you!

Hello, I am new to this community.

Is it a side effect of radiation if I feel a lump in my throat? I also need oxygen support cause my breathing cant keep up.

Done 1 chemo therapy and had an anaphylactic shock so the oncologist decided to stop, and we'll be switching to oral meds - The Tagrisso tablet.

Is there a way to sooth an irritated throat?

Does breathing exercise help? My left lung where my mass is growing collapsed.

Thank you.

Looking for experiences of people who have had either surgery or radiation for stage 1 lung cancer.

My mom is 68, had a wedge resection a few years ago and now there is a spot that lit up on PET scan. It’s small and she was offered surgery (lobectomy) or SBRT. She is having a very very difficult time deciding what to do. She is afraid of the recovery with lobectomy and worries about complications but also worries about recurrence if she settles for just radiation.

Curious if other people’s experiences and how they made a decision on one over the other.

My mother has stage I NSCLC squamous type. They approved her for a right upper lobectomy, but her cardiothoracic surgeon walked back on his words as we were literally scheduling the surgery today and wants the pulmonologist to make the final decision. Her FEV is 47% which he says is borderline. We have our appointment with pulmonology on Monday.

I just wanted to know what everyone else’s experiences were in regards to PFTs.

We lost my dad 5/3/25 to NSCLC squamous type, and this is honestly like reliving a nightmare for our entire family.