r/lungcancer

My dad (66) was recently diagnosed with stage IV NSCLC adenocarcinoma, presenting as a Pancoast tumor. He has lost about 20 lbs, has arm weakness/muscle loss, back pain, and metastatic disease to lymph nodes, lungs, and likely bone (C7). PD-L1 is <1%, and no targetable mutations have been found so far.

His treatment plan is Keytruda + Alimta, with carboplatin possibly being added later. We were told clinical trials are not currently an option because of his functional status.

A few questions:

- If you or a loved one had a similar diagnosis/treatment plan, what do you wish you knew before starting treatment?

- Has anyone with PD-L1 <1% had success with immunotherapy?

- We're considering a second opinion at an NCI-designated center (U of M). Did a second opinion change anything for you, even after treatment had already been started?

- His oncologist does not feel a PET scan is necessary. In a case like this, would you still want one?

We were given a rough prognosis of 18 months to 2 years. I'd appreciate hearing from anyone with a similar experience.

My sister wrote this but just makes it easier for any advice or suggestions that it’s already written in one place. Also, my dad has KRAS 12v strain and in May found he is stage four lung cancer that metastasized to his brain —- he began chemotherapy and immunotherapy at the end of June and has now completed two cycles of treatment. Despite everything his body has been through, he was able to get through those first two rounds, and we recently received some news: his latest brain MRI showed that the tumors in his brain are stable, with some actually decreasing in size. After whole-brain radiation and two rounds of treatment and hearing that some tumors have gotten smaller, our family was given an incredible amount of hope.

On August 3, Dad had an episode that appeared to be a seizure. My sister and Mom were able to get him safely to the ground and Dad was quickly transported to the hospital where he remained until last week.

Once at the hospital, doctors discovered another serious complication: large blood clots in both of his lungs. The pulmonary embolisms extended throughout both lungs and were putting significant strain on the right side of his heart. Dad was immediately started on IV blood thinners and was eventually transitioned to Eliquis, which he will continue taking to prevent additional clots while his body works to break down the existing ones.

Additionally, he also re-started on other medicine to help prevent additional seizures, as well as other medications.

It was an incredibly scary stretch, but after more than a week in the hospital, Dad stabilized enough to be discharged on August 12 to a one of the best assisted in-patient rehabilitation facilities close by.

That is where we are today: focused on recovery and getting Dad stronger.

Dad is still extremely weak and gets tired very easily. He is receiving physical therapy and IV hydration throughout the week, and he continues to push himself to do a little more each day.

Most importantly, Dad is still fighting and still wants to continue treatment.

His oncology team is encouraged by the stability of his cancer and plan to resume chemotherapy and immunotherapy once he has had a little more time to recover and regain strength. Right now, the hope is that treatment can restart within the next couple of weeks.

Guys… I’m exhausted. When I first posted months ago I was hopeful. Now I feel empty. I am so incredibly close to my dad and seeing him like this is making my heart implode. How do we get through this? I’m just so sad.

Hi everyone. 44 F I did smoke…I’m very newly diagnosed and still trying to process everything. I’m scared and could really use some positive stories from people who have been through something similar.
I have a 1.8 cm adenocarcinoma in my left upper lobe. I had two lymph nodes biopsied (11L and 4L), and unfortunately both were positive for adenocarcinoma. My scans also showed a destructive lesion on my right fifth rib, but it’s not yet clear whether that is cancer. I’m still waiting for full staging, so I don’t know yet if this is stage III or if the rib involvement could mean stage IV.
I’m a mom, and my biggest fear is dying and leaving my daughter. I recently lost my own mom after a long battle with dementia, and I feel like I’ve barely had time to grieve before facing this. My anxiety is very high, and every ache or sensation makes me worry the cancer has spread everywhere.
I would really appreciate hearing positive stories, especially from anyone who has had lymph node involvement, stage III disease, or even stage IV/oligometastatic disease and is doing well today. How long have you been living with it? Did treatment work for you? Were any of you initially terrified by your scans and later found things were not as bad as you feared?
I understand that no one can predict my individual outcome. I’m just hoping to hear from people who understand what this feels like and can offer some hope.
Thank you so much. 🩷

Has anyone developed skin tags after radiation treatments? I'm noticing some skin tags after my radiation treatment.

Hi everyone, my dad (64) was recently diagnosed with Stage 4 lung adenocarcinoma. His NGS showed EGFR exon 21 L858R, with a sacral bone metastasis. PD-L1 is 0%. His oncologist has recommended Tagrisso (osimertinib) 80 mg daily.

I’m just looking for personal experiences:

- How was your experience with Tagrisso?

- Did it work well for you/your family member? Any success stories or long-term responders?

- How long did Tagrisso keep the cancer under control?

- Did you take Tagrisso alone, or along with chemo/radiation?

- anything i should be asking the oncologist?

We’re really scared right now and would appreciate hearing from anyone who has been through something similar. ❤️

This honestly might be a long shot, but my mother was diagnosed with stage 3 lung cancer in December of last year. She has been undergoing chemotherapy for every 21 days and radiation therapy for five days a week, with two to three months off at a time. They discovered a lesion in her frontal lobe; therefore, she is back on chemotherapy. We will see the radiation doctor this week. What's actually going on and how to get her to eat is what I've been looking into. The Internet suggests puddings, smoothies, and protein shakes as potential options, but she isn't willing to try anything.

Hey everyone…. Just got the results back from my enlarged lymph node biopsy today that says I have small cell carcinoma. I’m a 33 year old male… looks like I have spots on my brain and spine so not looking great so far. Just looking to see if anyone has advice moving forward or any positive stories or recommendations.

My Mom had a left lower lobectomy 11/2023 for stage 1A3 squamous cell. No node involvement. She had a nodule grow to 9 mm on her last CT so she did a PET and it shows active. No other activity shown. They are recommending SBRT as it’s in her upper left lobe and the lobe could collapse if they try to biopsy. Just wondering if anyone has experienced anything similar. Thoughts?

55 male with stage 3 NSCLC adenocarcinoma lung cancer. I'm about to start chemotherapy (pemetrexed and carboplatin) and immunotherapy (keytruda). Honestly, I'm frightened, any advice?

My mom went to the ER Sunday for what she thought was a pinched nerve. Scans showed cancer in her left lung, chest lymph nodes, her brain and spine. They did the biopsy Friday and while final pathology results are not back yet, I was told they are positive it’s extensive small cell lung cancer. They have not told her or my dad yet (my mom requested the doctor call me after the biopsy but the dr told me to wait until they shared the news with her to mention it).

She started off with parts of her legs numb and giving out but could walk. Within the week she now can no longer walk without a walker and someone nearby incase she falls. Her legs are now completely numb and has loss sensation in her bladder. She now leaks a good amount of urine when she coughs. She can still stand up and sit down on her own, she just says her legs are weak. She’s been on steroids to reduce brain swelling. She also says her brain feels foggy but is blaming the pain meds and is now refusing them. They have not let her leave the hospital.

I was told she has a few months to a few years left, depending on how she responds to chemo. Since she didn’t find out she even had it until it’s already spread to the brain and spine, is it even possible that she has years left? She’s 68 and her only diagnoses prior were copd and arthritis, but was mobile and self sufficient.

*as of this morning she’s not allowed to even use the walker. Doctors and nurses seem it too unsafe.

My grandmother is about to start treatment next week. I need positive stories to share with her. She is usually such a positive person but I can tell when we talk how heavily this is weighing on her heart.

She was offered a clinical trial but that would put her treatment out two weeks and it been 9 weeks since we found out because of a weird ct scan following a lingering cough. So we are encouraging her to move forward with standard care treatment next week.

She has no biomarkers and the cancer has spread to her bones.

Thank you!

Mother is (stage 4) SCLC-ES, completed 4x carboplatin + etoposide, now in the immunotherapy (durvalumab) "maintenance" phase. She is having pretty severe nausea, seems to be worsening with each immunotherapy round, but the doc doesn't seem concerned. Zofran/compazine mostly holding it together, but obviously this is not a nice way to live.

Is this typical of durvalumab?

Haven't posted on here in awhile but my mother is around 10 months into a stage 4 NSCLC (adenocarcinoma) diagnosis and things are not looking great. She has been through 10 rounds of chemo+ keytruda. She tolerated this fairly well up until the 8th round. Her oncologist halted all treatment 3 weeks ago following a hospital stay and significant weight loss. She's down to 95lbs. Her most recent scans have showed that her main tumors has shrunk to 1/2 their original size but also shows further spread to her bones and a new 1 inch spot on her liver. The hope is that she'll be able to regain enough weight and strength to try Lumakras..which I believe is a targeted treatment? She does have a kras variant. Hospice has also been discussed a bit but she is not emotionally ready to make that transition so we're sticking with just palliative care for now. Her weight loss/lack of appetite is our biggest struggle currently. I wish there was more I could do .

Hi all,

My 69 year old mother was diagnosed with "poorly differentiated adenocarcinoma of the right lung (lower lobe) with focal sarcomatoid features". Her biopsy this Wednesday was positive for TTF-1 and napsin A (patchy) and negative for p40, which the report says supports lung adenocarcinoma. She smoked for 12 years but quit over 30 years ago and does not drink or any other substances.

Her PD-L1 TPS is 70%. EGFR and ALK testing are currently pending, and the pathology report says there is adequate tissue for additional biomarker testing.

Her primary tumor is in the right lower lobe, currently about 2.4 cm but there is a new 0.8-cm satellite nodule in the same right lower lobe and both 4R mediastinal lymph nodes and 11R lymph node are also positive.

Her PET/CT in late June showed no destructive bone lesions. However, the primary tumor has grown 1 centimeter via the pre-biospy CT and bronchoscopy.

We haven't met with oncology yet, so we don't have an official stage or treatment plan. I know this is the hardest part but I'm screaming inside! She is a caregiver to my younger brother who has advanced schizophrenia. I'm worried sick for him both mentally and physically.

The words “poorly differentiated” and “focal sarcomatoid features” are especially scary to me. I'd really appreciate hearing from anyone with lung adenocarcinoma with similar pathology because my brain is immediately going to Pulmonary sarcomatoid carcinoma which seems like essentially a death sentence. 😭

What treatment did you receive, and was surgery still an option after initial treatment? I plan to requested further biomaker testing and have gathered all of her physical reports and scans to try to get a second opinion. Grasping at straws I suppose, but i have to stay busy or I'll crumble.

Just adding for context- I'm 47 years old and my mother and I did not have a great relationship until about 8 years ago. We had a lot of family trauma that neither of us properly dealt with but we finally made amends and are extremely close now. I never met my father. I feel like I finally have a parent and she's being ripped away.

I'm sorry if I sound all over the place, but i mentally am right now. If you made it this far, thanks for listening

I just had a wedge resection (last week) and I got the results back. ( any advice on how to fckn sleep with this pain I would appreciate it!)

They got it ALL, it was non small cell, The margins were clean and The lymph nodes were lean also. This was the best birthday present I could have gotten.

I feel that FOR ME, having it removed instead of biopsy then removal was the best option. Have a friend who went the radiation route 1st, he just had another biopsy done, and we are waiting for his results ( I wish he would stop smoking cigarettes ( but I will NOT say anything)).

I'm just beginning my journey and I am looking to get two additional opinions at either NYU or Mount Sinai. I'm currently being worked up at MSK in New Jersey. Does anybody have a recommendation for a thoracic oncologist in New York City at either of those hospitals?

Hi everyone,
I’m writing this because my mother has stage 4 lung adenocarcinoma with a HER2 (ERBB2) mutation.
She has already gone through 4 cycles of chemotherapy, including Carboplatin, but unfortunately her latest scans showed that the cancer had progressed / increased despite the treatment. Because of the HER2 mutation, her oncologists have now decided to start her on fam-trastuzumab deruxtecan (Enhertu).
The cancer has also spread to her brain (cerebellum), which is obviously making all of this very frightening for our family.
She is extremely scared about starting the new treatment, and honestly, so am I.
I would really appreciate hearing from anyone who has personal experience with Enhertu for HER2-mutated lung adenocarcinoma, especially:
How did you respond to Enhertu?
Did your tumors shrink or stabilize?
How long did it work for you?
Did you have brain metastases, and did Enhertu help with them?
What side effects did you experience?
Is there anything you wish you had known before starting?
I know everyone’s situation is different, and I’m not looking for medical advice. I’d just really like to hear some real experiences and hopefully give my mother a little bit of hope.
Thank you ❤️

Hi everyone,

My father (69) has recently been diagnosed with stage 4 non-small cell lung cancer.

He has both adenocarcinoma and squamous features, PD-L1 is below 1%, and molecular testing did not find any targetable mutations.

Bones Mets (C7, T1 - T3), unable to move. Oxygen therapy 24/7.

What makes things more complicated is that he also has significant heart disease, with an ejection fraction of around 35%, so his doctors are trying to choose a treatment that will not put too much stress on his heart.

I know every case is different and I'm not looking for medical advice or miracle treatments. Right now, I would really appreciate hearing from people who have been in a similar situation, either patients themselves or family members.

Has anyone here had stage 4 NSCLC with low/negative PD-L1 and no actionable mutations, especially with other serious health problems that limited treatment options? How did things go? Did you or your loved one respond well to a gentler treatment plan? Were there periods of stability or good quality of life that you didn't expect at the beginning?

At the moment everything feels very scary, and I think hearing some real stories of people who managed to have meaningful time, stability, or even unexpectedly good responses would help us a lot.

Thank you to anyone willing to share their experience.

Gio

My grandma has extensive stage 4 SCLC. We did one round of chemo and had to stop because she was too weak to do another round so currently she is in palliative care. They seem to really drug her up on pain meds and haladol which I don’t exactly agree with. Any other caregivers with similar situations?

Hi everyone, I’m writing about my mother, who is 56 and has stage IV non-small cell lung adenocarcinoma with metastases to bone, adrenal gland, lymph nodes.
She is currently receiving a combination of chemotherapy and immunotherapy.
Over the last several days she has developed a persistent low-grade fever, usually around 37.5–38.0°C (99.5–100.4°F). What is strange is that, overall, she feels relatively well. She does not look seriously ill and has not had major chills or a significant deterioration in her general condition.
The fever actually started the day before her most recent immunotherapy infusion, so it wasn’t simply an immediate infusion reaction. She has also had muscle aches/pain in both legs and at one point some pain in her right flank, which was evaluated and considered possibly a renal colic.
Recent blood tests were fairly reassuring:
WBC: 5.8 ×10³/µL
Absolute neutrophils: 4.4 ×10³/µL
Neutrophils: 76.4%
Lymphocytes: 0.9 ×10³/µL
Platelets: 257 ×10³/µL
Hemoglobin: 12.6 g/dL
Creatinine: 0.47 mg/dL
Bilirubin: normal
AST/GOT: 56 U/L
ALT/GPT: 72 U/L
CRP was around 0.9 mg/dL / 9 mg/L
So at the time of the blood tests she was not neutropenic, and there was no obvious major organ dysfunction, although her liver enzymes were mildly elevated.
We obviously know that infection still has to be ruled out even with normal white blood cells/neutrophils, especially in a cancer patient. We are also wondering whether this could be an inflammatory/immune-related effect of immunotherapy, since she is also having muscle aches and mild liver enzyme elevation.
The possibility that scares us is neoplastic/tumor fever, although I understand that this is generally considered only after infections and treatment-related causes have been excluded.
I’m not asking Reddit for a diagnosis — her oncology team is following her — but I would really like to hear from people who have been through something similar:
Did anyone on chemo + immunotherapy have a persistent fever around 37.5–38°C for several days while otherwise feeling relatively well?
Was it eventually attributed to immunotherapy, chemotherapy, an infection, or tumor fever? How long did it last, and what tests helped your doctors figure out the cause?
Any personal experiences would be greatly appreciated.