Hi, everyone! my friend's mother, who I'm close to, is a chronic smoker and recently got diagnosed with stage 4 lung cancer. I'm currently out of town and her condition made me curious what they can and can't do if they reach that stage.

Please feel free to share your experience with people with lung cancer? Thank you so much!

What's working for you?

Mum's about to start on Tagrisso and her main issue is sever pain from extensive bone mets

my mom was possibly exposed to the flu, even with us being careful (the fact that the flu can be spread 1 day before symptoms even start is terrible!) she is 65F, stage 3 adenocarcinoma. shes had 1 round of cisplatin/alimta and her wbc are lower, as expected.

i’m freaking out a bit and im scared to even ask y’all… if my mom starts getting flu symptoms, do we go straight to the ER? i am her caretaker living with her right now, and i was exposed too. any advice would be greatly appreciated.

(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. 🤍

My mum needs to go through a lung test to see if her lungs are strong enough to get through an operation before the doctors decide whether she will have part of her lung removed or if they start with chemo. Has anyone here or no anyone that has been cleared with strong enough lungs even after nearly half a lifetime of smoking and being an asthma sufferer? My mum was not lazy though she would do miles walks almost daily before the cancer stopped her.

Had my right lower lobe taken out about a week ago. I've been working on re-expanding my lungs and clearing out the gunk, but yesterday there was some fresh red blood in what came from my lungs. A very small amount, but still alarming because I thought it was supposed to be old/brown blood 8 days post op?

Does anyone had any experience with coughing up mucus with fresh blood streaks so long after surgery?

My dad (71M) recently progressed into stage 4. He had a wedge resection last January (2024) and radiation therapy over the summer. He declined chemotherapy last year due to a friend of his having a tough time with it. Now it has metastasized to his femur. His doctor is planning to start Keytruda immunotherapy in a couple of weeks and he will likely have radiation as well. Still declining chemo. He has severe rheumatoid arthritis and is on an infusion therapy for that every 5-6 months, which has been great. Rituximab, I believe, which he will have to stop to begin Keytruda. Trouble is, the RA is likely to become worse due to the Keytruda’s immune-enhancing effects. His RA treatments suppress the immune system. Anyone have experience with lung cancer and RA? Just looking for thoughts/experiences. Thanks!

My mom was diagnosed with stage 4 NSCLC but a rare type basaloid squamous cell in September. She felt fine. She started to get a bit tired at the end of December and then a week ago she declined rapidly and died on Sunday. I’m numb. I cannot imagine my life without her. A few weeks ago she was happily babysitting my 17mo old. It feels surreal.

Hi All,

I am soon to be starting a new clinical trial for my stage 4 NSCLC (Link to the trial info below).

Does anybody have any experience with ANTI-Vista therapy either stand alone or in combination with anti pd1 immunotherapy? I start this trial soon and it seems that ANTI-Vista and targeting VISTA in solid tumors is pretty new in cancer treatment so I cant find any data on how effective it is...

I am excited to start the trial, but I am also nervous as the medicine is so new, I would hate to see further progression...I feel like it is such an absolute toss up being in a clinical trial as to whether or not it will work, but we do have plenty of other treatment options according to my oncologist, they just want to rule out all immunotherapy options before falling back on more standard chemo and other drugs that have worked for me in the past. It seems like my oncologist wants me in as many clinical trials as possible while I am still eligible and healthy because due to my overall good health they said I am an easy candidate for most trials out there so they want to take advantage...seems like a good approach to me i guess?

Initial results from a first-in-human phase 1 study of SNS-101 (pH-selective anti-VISTA antibody) alone or in combination with cemiplimab in patients with advanced solid tumors. | Journal of Clinical Oncology

Thanks!

Hello, I just posted another thing regarding my dad’s treatment but I was just hoping I could gain some support and insight from those who have gone through a similar experience. I am a junior in college, I am around 3 hours away from home so not too far but right now feels like it’s across the ocean. I do feel guilty for having emotion because I am not the one with cancer, I should be the strong support for my parents at this time but it’s hard. I left for school at the beginning of January and it’s been going okay. Some of the days, I feel like nothing is effecting me, I have so much confidence in my dad and it’s all going alright and other days it all feels like it’s crashing down. My course work is getting intense, needing a bunch of time from me and again, on some of these days I can complete it. Usually though, I feel like don’t have a grasp on anything, like that meme with the dog saying “everything is fine” while the house is on fire. I do complete my work (with zero motivation), it just feels like I am failing nor doing the work correctly . I want to stay in school and complete my work because I know that’s what my dad wants and if I stayed home I couldn’t do anything for him just be in the way. I just am struggling with figuring out this new balance and reality. I don’t want to fall behind or live in this depression for forever. Notes: I feel like I should add my professor’s know about my dad, one is very supporting allowed me to leave class today because I was crying and my other professor cares but the class is a BUNCH of work so it’s not like I can just stop everything. I also do have a therapist that I see monthly which is very helpful. As well as a few friends but I feel like I need more supportive friends as my friends feel awkward when I bring it up and really never ask me how I am. (I know it’s not their job but it would feel nice) At the same time though, it is helpful to just have people to talk about school and go out to party with as well as watch movies and whatnot with.

Hello, I apologize if this is in the wrong place. I don’t really know where to exactly post this and if it’s okay I am not the one with cancer. My dad was diagnosed with stage four non small cell lung cancer a few weeks ago, this was after being sick since October and all the doctors saying it was pneumonia. He was recently admitted into the hospital to being treatment and see what they can do. They are going to start radiation (5 times) and pills. I was just wondering what I can do to support him during this time? I don’t live at home which is harder but I just want to somehow be there for him. I try to call all the time but I fear I’m not doing enough. I hope this is an okay question as well, for those who have gone through radiation or are going through radiation how painful is it? What can we expect during this process? How can we help during radiation? I know this will change him but I am just scared he will not be the same funny guy he was before. Maybe I am over reacting but this is the first time I have ever dealt with cancer and I really don’t want what to do.

Hi all,

My father was diagnosed with NSCLC in 2023. Never smoked a cigarette in his life, was a marathoner, and ate an exceptionally healthy diet. By the time it was found, it was 7cm and a part of the tumor “crawled” through one of his heart valves and was bouncing around in his heart. He was so healthy only manifested symptoms at this point (persistent cough for a month. He was fortunate to have the ALK mutation so he went on Alectanib, and the tumor shrunk by 80% in 6 months before having a modified lobectomy to remove the cancer from the lung and the heart.

Surgery was successful and he recovered exceptionally quickly. Margins biopsied 1cm outside of the visible cancer area turned up negative for cancer. He continued to stay on the alectinib with minimal side effects before experiencing worsening symptoms Nov 2024. Found out that somehow he had multiple metastaticies on various vertebrae as well as random other areas. He was then put on lorbrena and which is extremely well indicated for metastatic ALK positive lung cancer. Well controlled until Jan 10 2025 when he started coughing up an abnormal amount of phlegm. He developed a pleural effusion and had the fluid removed on Jan 17 2025.

On Jan 19 he suffered a pretty severe stroke. Complete right MCA occlusion with an infarct volume of 72ml. He’s made great progress over the last few weeks, however today we got news that the pleural effusion he got drained was actually adenocarcinoma.

He’s been treated like he’s incapable of processing information by basically every doctor that’s discussed his prognosis. They talk about him, not to him. He is completely lucid and processes stuff in real time, his main issue is just speech delay yet they treat him like a half human and have pretty much counted him out in there reports when he arrived to the icu on the first day.

I guess my question is, from a cancer perspective, could the adenocarcinoma be managed if he gets back on the targeted chemo? Any resources would be greatly appreciated!

NSCLC, stage 4, bone Mets to spine, sternum, ribs… I just found out that there is decreased T1 signal within the clivus centrally as well as along the right parietal calvarium seen on axial image 24 suspicious for osseous metastatic disease.

Feeling discouraged

I’m on Tagrisso and Carbo/Altima. Any thoughts?

I know it's a bit early for results. Haven't heard anything positive or negative since they started the trial.

It’s been five days since his bronchoscopy but my dads doctor just called and told us he has stage 4 extensive SCLC and it has spread to the lymph nodes in his chest. They are going to put in an urgent referral to see the oncologist soon but I’m so scared I wish this process would go faster. I don’t know how much time I have with my dad. I’m so scared for him. I don’t want him to suffer. I don’t know what to expect.

My mom was diagnosed with Stage 2 non small cell lung cancer. Although on the border with Stage 1 the Dr. said. He seemed optimistic and she starts chemo for three months then will have the nodule removed. The only impacted parts were a small part of her lung and a local lymph node.

What are her chances now? The nodules concerning and we were expecting Stage 4, but this is much better than thought, but am still concerned with the future.

Hello everybody, I am coming here to look for some advice on how to deal with some news that I received with my father last week.

I understand more details may be required, in short, we were told that my dad is in a situation where nothing can be done, and that now we need to prepare for palliative care and make him as comfortable as possible. The nurse after the meeting told me to expect 2-5 months to live.

You will see from the below that my dad is not in the best of health, but it is very hard to accept that absolutely nothing can be done at this point. I would appreciate it if you have any help or advice on how to think about this, questions to probe to the nurses, or any other avenues that I can pursue. At the same time, if the below does make sense and it's likely nothing else can be done, please feel free to say that.

Background: 66 y/o male. Ex-smoker. Previous asbestos exposure. Drinker.

Location: UK, this is NHS diagnosis

Diagnoses: 

-Received empirical SABR radiotherapy (8 fractions) in Nov 23 for presumed T1b N0 M0 left upper lobe lung cancer. Biopsy not pursued due to poor state of lungs from COPD.

-Severe Chronic Obstructive Pulmonary Disease (COPD - like emphysema) and on long-term oxygen therapy at 2 litres/min for past ~6 months. At present, advised to be on Oxygen 16 hours per day.

-Hypertension, AFib

-Had pneumonia over Xmas with 5-6 days in hospital

News we just received:

- Recent PET scan shows presumed new cancer in bottom of lung and also presumed nodal recurrence of previous lung cancer (possibly station 5 and 4L). Estimates size 3.5cm (golf ball)

- Ineligible for radiotherapy due to lung damage (COFD), fibrosis, and scar tissue from prior SABR treatment. Additionally, the new diagnosis is too close to the heart.

- Ineligible for biopsy due to lung damage. Cannot go through lung as it will puncture and risk of death. Cannot go through windpipe as the tumor is too far away from the windpipe for the biopsy tool? to reach it.

- Cannot give proactive chemo due to needing biopsy for treatment.

- "Months to live" with "nothing else they can do" - recommending palliative care for pain.

I've been on these boards since my diagnosis in November but haven't posted. Not really sure what I have to say, but I thought I'd post my experience as it seems the "Mucinous" aspect of my cancer makes it much more uncommon and if someone is looking for it I'd like to at least have posted what I have experienced.

Over a year ago I noticed a wheeze developing in my lungs. I saw my doctor who thought it was just a stubborn cold side effect. Then they thought it was acid-reflux related. Luckily, an age related heart scan showed some clouding in the lungs and that got me a CT Scan in March. The ground glass opacity was very evident, but the pulmonologist was confident it wasn't cancer and said we'd look again in 3 months. He had the same feeling in June. The 3rd CT scan in October was worse and he ordered a Bronchoscopy. 3 days after that procedure I was told I had cancer in my right lung.

I am lucky to live in a city with lots of top rated hospitals, but the mucinous aspect of the cancer still threw off some of the early diagnoses. My initial PET Scan only showed one little hotspot on my right lung, maybe a cm large, and we were hopeful that it could be cut out and we could get on with my life. But the surgeon had seen this before and insisted on a surgical biopsy of my left lung. There was less inflammation of the left lung but there was some, and he felt it was impossible some of the cancer hadn't spread there. As a non-doctor, I didn't understand this. If my lymph nodes were clear (they are) how could it spread to the second lung. That is one of the properties of mucinous lung cancer, and the biopsy revealed I had a diffuse spread in the left lung. Surgery was out.

Three weeks after the biopsy I began combined chemo and immunotherapy. Based on the cancer's biomarkers the decision (both my primary and the 2nd opinion concurred, btw) was to use 2 Chemos (Pemetrexed & Carboplatin) and 2 Immunotherapies (Nivolumab & Ipilimumab). I repeat these every 3 weeks except for the Ipilimumab which is every 6 weeks. I've completed 2 sessions so far. Will do at least 4 and potentially more depending on tolerance and effectiveness.

After the first session I felt fine for 2 days and then my lungs really filled up with fluid. A CT scan showed what the CT tech described as a sudden growth of the cancer, but my doctor said he was very confident it was pseudo progression as cancer doesn't explode in growth suddenly in a week. After an IV bag with some steroids and then a regiment of steroids at home the pseudo progression settled down. 10 days after my first session I actually felt better than I had since my biopsy. Still coughing but the wetness was far less.

My second session was 5 days ago. Did not react like last time but definitely feel a little heavier in the lungs again, especially at night. Really hoping it improves like last time (without steroids) and that I have a great week 2 & 3 post chemo. Of note is that I didn't have the Ipilimumab this time around, which I think can elicit stronger reactions.

All that said, I also know that these reactions, even Pseudo Progression, can be a good sign that your body is reacting and things are happening.

I'll really start to gain some confidence when the cough goes away. After 13 months of coughing I've never wanted anything more in my life. My next PET scan is in 11 days, but there is a caveat in that nothing much showed up there last time. So we'll be looking for less inflammation, I guess.

If anyone has experience with mucinous lung cancer I'd certainly be curious to learn anything you experienced, but again my main hope was to add something here for others searching the term.

Good luck everyone in your battles.

My cousin’s 7-month-old baby from Europe was diagnosed with ALK-positive histiocytosis. She underwent three rounds of chemotherapy along with prednisone. However, after three sessions, a scan revealed organ involvement, including the liver, lungs, and kidneys. The chemotherapy was stopped, and she is now only on prednisone. The doctors are uncertain about the best therapy to proceed with, considering the organ damage. If anyone has advice or knows someone who has been through a similar situation, please share.

I have some questions about my doctor recommending surgery without giving me other options. Pathology found cancer on one lung nodules, and the nodule right next to is benign. Had the lung nodules for 20+ years with no symptoms of lung cancer which continues to date. Still zero symptoms. I understand the lungs have very few nerve endings so you may not feel much until lung cancer progresses. Cutting out a portion of your lung is not a small decision, but from everything I can read online, it sounds like you don't get surgery, it dramatically increases the chance of premature death.

My dad passed away this morning. I’m in disbelief that I will no longer be with him. It was so quick. 2 month after diagnosis. I don’t know how we will cope with this pain. I miss him already.

Apologies if this is a question that's been asked a lot. It happened suddenly and we're going down to visit in a week or so, we're kind of scrambling. She is 52 and quit smoking about a decade ago (or so I've been told, her life is very hard so who knows), this took us all by surprise.

From what I've read here, testing for biomarkers is a common recommendation. But it seems to be more of a thing for nonsmokers who might have genetic mutations, which seems unlikely for her. Would this be likely to help her?

She just started chemo and radiation a few days ago, which is when her diagnosis was upgraded to stage 4 by another specialist. I don't want to overwhelm her with overly technical stuff but I want her to have the best odds. She's also a full-time caregiver for her husband who has pancreatic cancer. We're in shock.

Thank you, and my heart goes out to all of you dealing with this up close. I'm just trying to help however I can.

Edit: Sorry, should have probably mentioned, it's adenocarcinoma.

I will be seeing a thoracic surgeon to get a consult for a surgery next week. Howeve, I'm wondering if it would be a good idea to see at least two surgeons and pick the one you feel most comfortable with and the one you have more confidence in before you go to surgery. Or would I be waisting time getting a second opinion? Getting a surgery and taking time to recover from the surgery will be very disruptive to my daily life and attending to my responsibilities. All the more so since I have to do it alone as a single person with no family support.

My mom was diagnosed with non small cell lung cancer. No stage given yet, but It may have spread to the esophagus, which we are still figuring out. He told her that she will live though. This is at Sloan Kettering, so some of the best in the world. Should we believe him?

(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. 🤍

Hi all. My mother (65f) was recently diagnosed with stage 4 adenocarcinoma of the lung, with pretty extensive metastasis through lymph nodes, salivary gland, a kidney, rib, and multiple scattered Mets through out her musculature.

It’s been a whirlwind of hospital visits from the beginning. Starting with blood clots in her legs and lungs, having a series of small strokes, and finally a severe hypoxic episode that was causing severe delusions/hallucinations. Most recently for a fall while trying to lift her oxygen tank.

Compounded with the cancer, she also has cirrhosis, and has lost a substantial amount of weight (17% of her body weight in around a month).

She went into oncology rehab after her second to last hospital visit, and they got her cognitively back in place, helped her gain some strength back, before we had her placed in an assisted living facility.

This coming Monday is her first appointment with her oncologist since everything has occurred, and since her genetic testing results came back. No targetable mutations, but she has high PDL1 (80%) and he told us that immunotherapy will be her best bet.

My mom, frankly, is not at all aware of the direness of her situation. She’s under the impression we “caught it early” will be “back home in a few weeks” and is still talking about life 20 years from now.

I want to support her, but at the same time, don’t want to be completely devastated/blindsided by the blow, and need to prepare myself. It’s only been three weeks since she was lying in a hospital bed, completely unconscious, and we were being told by palliative care that she only has a few weeks.

I will support her. I will not crush her hopes and dreams, and I have seen so many stories on here of miraculous recovery. But I never see stories of stage 4, with this level of spread, and I just can not deal with the yo-yoing of hopes being raised and then crashing down.

I think I just needed to vent more than anything.

An 8-centimeter lump was discovered in my mother’s lungs through an Xray in October, and a subsequent CT scan two weeks later confirmed its size to be 12 centimeters. After undergoing biopsy and several cancer markers, she was diagnosed with Stage 3C lung cancer in November. A final confirmatory test was conducted in December to determine her treatment plan, but unfortunately, it was never started due to her rapidly deteriorating condition. The first two photos were taken on December 20, 2024, the last day she was able to visit the hospital with minimal assistance. A few days later, she lost her ability to walk. She succumbed to non small cell lung cancer January 14, 2025. 🥺

hi my dad was diagnosed with adenocarcinoma stage iv a couple months ago. genetic testing showed kras q61h mutation along with braf wild type (also don’t understand what wild type means). our oncologist told us that there is currently no targeted treatment for this mutation so he will continue his second round of chemo (carbo + pemetrexed) and they will be adding keytruda.

from what i’ve read this kras mutation is quite uncommon so i wanted to ask if anyone here has had it (or someone you know). would like to know what kind of treatment they received and if there are any clinical trials that you know of.

thank you!