My mom was on keytruda for two years which did miracles but with one stubborn primary tumor post which they stopped immunotherapy for a year. Now when the cancer came back they put her on opdivo and opdivo yervoy every other cycle and beginning two cycle of chemo.

The first scan shower improvement but the next scan shows growth. She lost ten kgs due to immuno.

I feel sick to my stomach to see her weak and sleep all the time. I thought this would work and she is that miracle patient who will reach NED with this combo

Now i am scared thinking of what will happen to her? Chemo will make her sick as well , will it work ? Is she nearing end? What if chemo doesn’t work?

Did chemo help reach anyone NED? She has mets to spine recently and primary tumor grown as well

I don’t know what to think or expect. Any, literally any recommendations are welcome. Any knowledge. He’s only 65.

Hi guys, my mom (57, never smoked) has been diagnosed with stage IV lungcancer this week. Doctors will do a test on her to see if it’s the genetic mutation or not. If so, she will get pills to try and treat it. If not, she will have chemotherapy and immune therapy. If those don’t work, she has 1-2 years to live. She is quite active and eats healthy most of the time.

I’ve been a mess ever since we found out. I’m sad, mad, stressed, empty all at the same time. Does anyone recognize this story and feelings? I want to know what her chances are. I’ve lost my sister in 2011 due to a chronic illness and not sure if I’ll be able to handle another loss like that.

Thank you if you manage to read through all of this ! I started my Stage IV adenocarcinoma cocktails in January after a lobectomy changed my original stage one diagnosis when they saw cancer in the pleura.

Treatments of carboplatin, pemtrexed and cemiplimab (immunotherapy). After 4th treatment my liver values started to elevate to the point I was taken off immunotherapy and put on steroids. went back to the chemo cocktail only once liver values normalized . (carbo and pemtrexed) after chemo only, my liver values started increasing again. dr stopped all infusions and my liver values went back to normal. sent me to the liver Doctor who suggested we try 1 dose of chemo by itself to see how it affects my liver values, and then one dose of immunotherapy by itself to see how it affects my liver values to determine who is the culprit! Noting that my liver values have never been elevated before drug induced.

So, had my blood tests two days before chemo was scheduled for this Friday and out of the blue my liver values have increased even though I have not had any infusions for over two months. NOW THE ONCOLOGIST AND THE HEPATOLOGIST ARE STUMPED! They cannot continue any treatment until the liver values are normal in order to figure out why they have gone up.

Has anybody experienced anything similar to this? To be honest I’m really frustrated that I have been doing so well and tolerating treatments but these liver values have made me go without treatments for three months now and I am getting nervous!

My friend was diagnosed with Adenocarcinoma of Lung (Stage 4), and a separate primary cancer of his kidney which is 7cm. The lung cancer has spread to lymph nodes in his chest, to his rib, and gone to one node in his brain (thought to be the thalamus).

The multidisciplinary team said it would be chemo + radiotherapy, and removal of the kidney. But now they are saying they just want him to start immunotherapy (Atezolizumab) starting in 4 weeks. They've booked an MRI scan for the brain mets and he will see a neurologist afterwards. The urologist wants to wait three months and check back then on the kidney cancer, even though the tumour is already 7cm.

This all started back in July 2024 when he had a pneumothorax, it was treated and the consultant noticed a small "shadow" on his lung, but was mildly concerned and wrote to the doctor to ask for more tests to investigate that "shadow". He certainly did not have cancer then. The doctor did nothing. It was two months ago when he became unwell and then told after numerous tests he had Stage 4 lung cancer.

I am so frightened for him, and spend all my days crying.

Hi again. Another question to you lovely people. My MIL’s blood oxygen is not the best. Without her supplemental oxygen, it tends to be in the low 80s, and even with the supplemental oxygen it never goes above 91/92. Has anyone had experience with blood oxygen improving after treatment? She is very worried these will be her blood oxygen levels forever and that she’ll permanently have to have supplemental oxygen. I just want to know realistically what to expect. Thanks ❤️

Mom (58) was diagnosed with stage IV NSCLC last year. She was on Tagrisso for a year before developing a resistance to it, then was on another gene therapy for two weeks before that one gave her severe side effects and she had to stop. She’s gotten so much worse in the last two months, difficulty breathing, can’t lie down because of the breathing, no appetite and barely eating, severe bloating / can’t poop so her stomach is always hurting. Doctors are advising chemo and we will give it a try. She’s honestly so tired and in so much pain, but the doctors’ encouragement gave her some hope. I don’t know, I think deep down we all know she doesn’t have long. I’m just looking for support and any kind of miracle story here.

Thanks for reading my rant.

Update 1: mom started chemo today (pemetrexed) - fingers crossed for good efficacy!

Hello 55 year old male. Been a whirlwind these last two weeks. Went to ER for chest issue, while looking at that the found a mass a little smaller than golf ball in upper right lung. Pet scan lit up in the Nodule at 4.5%. The lymph node next to it lit up a little at 2.5%. Small nodule in abdomen was listed as small and reactive. Biopsy showed non small cell cancer. They sent out for more tests. Have appointment with my Dr at Sloan Kettering in NYC Thursday the 21st. Not sure if biopsy the lymph node as that will tell if past stage 1 or 2. As in in lymph node, can go to stage 3B. Uploaded the finding in AI chatGPT. And broke Everything down. Scared to death, but looks like started in lung and didn’t move anywhere else. Brain MRI came back clean. In perfect world, just the one nodule and they will cut the top right lung out Removing the nodule and the lymph node next to it. If in lymph node sounds like will do chemo and radiation then surgery. If not in lymph node just the surgery first. I smoked when was early 20’s and vaped a few years ago that was it. Debated, but will do my best to fight his!

I pray for you all here, as I start my cancer journey. Love You All!❤️‍🩹

My husband has poorly differentiated nsclc, stage IV, on Keytruda. He had a bronch and grew a mycobacterium that requires 3 antibiotics for at least 12 months. Has anyone else experienced this, and how rough are the side effects?

(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 59 year mum has stage 4 NSCLC. She’s just had her third round of keytruda and chemo. She has a CT scan next week to see if it’s working.

So far the bumps along the way have included it spreading to her femur (just before her first treatment - she had a rod put in her hip to knee) and today we learned she has 2x ‘small spots’ on her brain - her consultant seemed really relaxed and told us SRS with Cyberknife is amazing for this.

She had a blood transfusion today for her anaemia symptoms. She’ll be having radiotherapy on her femur next week, then SRS on her brain, then her fourth and final round of chemo and keytruda before going on to have keytruda alone every few weeks.

Don’t know what I’m really looking for here. I’m overwhelmed. Any experience? Hope? I’m 27 weeks pregnant with my first baby and I just have never needed my mum more.

Diagnosed with stage 4 lung cancer with brain metastasis. Progression has been aggressive both in lungs and brain as evidenced from imaging now vs 2 months ago. I have 11 brain lesions, all under 1 cm and with limited edema. Currently waiting for foundation One results in 2-3 weeks.

So onc A wants me to start on chemo right away and sees no reason to start radiotherapy now.

Onc B thinks inmediate relief of my brain is best approach and has introduced me to a gamma knife specialist. For systemic treatment wait for F1 results. He thinks starting with chemo now blindly is worst idea.

Onc C thinks best strategy is first wait for F1 cause if i m ALK+ i dont even need gamma knife. He agrees my brain is most critical and wants me to take steroids meanwhile we wait for results.

3 oncs, 3 different strategies, personally I like B or C but A and C are supposedly lung cancer specialists..

What do I do?

My dad is in “remission” after chemo and radiation treatment for stage III small cell lung cancer, diagnosed November 2024. He was still in immunotherapy and started finding it harder to breathe. About 3/4 weeks ago, he ends up at the hospital and was there for about 4 days and was sent home with an oxygen machine and antibiotics for pneumonia. Jump to last week, while I was visiting him, he asked to go the ER, released the same day for pneumonia with a new antibiotic. Two days later he was having an even more difficult time breathing. We went to a new ER and he has been hospitalized ever since. Intubated twice, this time it’s been three days. He has been blood tested for everything kind of pneumonia and it’s still unclear. I feel like everyone at the hospital is hopeful but it’s sad to see my dad in this state. He has NEVER been this weak, even during all of his treatment.

His nurse at the hospital said he is in remission which I have never heard before. I just want more answers but I understand they can’t say what way this will go.

I live out of state so I am in a foreign place. My whole family is. He lives half the year in the same state as us and half in Nevada.

If anyone has experience with this, please lmk! I want to find comfort in others experiences. Good and bad.

UPDATE: he didn’t make it. Please love and kiss your loved ones at every possibility

A family member is recently diagnosed and today the nurses told us to start Ensure. Looking to ingredients and sugar amount, it doesn't seem very healthy. Can anyone recommend a good and healthy protein shake or power? Thank you.

My grandma has two primary cancers; a colon tumor (likely stage 3, 7 cm, diagnosed July 4) and a poorly differentiated lung adenocarcinoma discovered a month ago. She’s had months of constipation and the colonoscopy showed severe obstruction; laxatives have become decreasingly effective and she's also eating less out of fear. We’ve been at Mayo for over a month, but no treatment has started for either cancer.

Over the past month, there have been many delays with appointment and biopsy scheduling: we were supposed to do a lung biopsy 3 weeks ago but were notified on the day of that they forgot they actually needed another CT scan before being able to do that, resulting in another 2 week delay in the discovery of the lung tumor. They had a multidisciplinary meeting on Monday and concluded that they aren't sure what to do about either cancer until we do another lung biopsy scheduled a week later to see if the lung cancer has spread to the lymph nodes (we didn't receive a clear answer as to why this wasn't done during the initial biopsy); even after that, the doctors will need to reconvene to discuss, which they say would take another 2 weeks. Our suggestion to operate on the colon tumor in the meantime so that my grandma could recover over the next multiple weeks until they decide on what to do with the lung cancer was ignored for 2 weeks then declined, and our followups asking to discuss further have not been responded to by our GI doctor who is currently on vacation. No one has responded to our request to talk to another GI doctor.

We’ve tried escalating internally to very little avail. Has anyone faced similar dual-diagnosis delays? How did you get things moving? Did you consider switching hospitals, and if so, how did you avoid “starting over” and losing more time? We know that with any hospital there will be delays but with every day that passes, my grandma's cancers are getting worse, and it feels like there's nothing we can do for at least another very long waiting period.

My MIL is fighting Stage 4 adenocarcinoma and just had a re-staging scan after several cycles of keytruda that showed progression.

it’s probably looking like chemo is the next step—but when she was initially dx they only tested a tissue sample for ALK, TRK, and ROS1, for which she was all negative. They said there wasn’t sufficient tissue to test for anything else.

She had nearly 100% PDL1 and yet the immunotherapy hasn’t seemed to work. So I guess I have several questions.

1) Does anyone have experience with initial progression on immunotherapy before it actually worked/kicked in?

2) Should we press for a liquid biopsy? I keep wondering if she has another mutation that they simply didn’t test for, like EFGR, that could be the reason she’s not responding to immunotherapy despite a high PDL1

3) is there any hope with chemo if she failed out of immunotherapy and there are no targetable mutations?

Thank you so much. God this is so hard

Hi everyone, I’m reaching out because I’m struggling right now and really need to hear from people who have been where I am. I’m going a bit crazy with fear and uncertainty. If you’ve been diagnosed with stage 4 lung cancer without targetable mutations, I’d love to know: • How long has it been since your diagnosis? • What treatment path worked for you? • How are you doing now? • What kept you going during the hardest parts? •Are you in remission or NED?

I know everyone’s journey is different, and I’m not expecting guarantees or miracle stories. I just need to see that there are people out there living full lives despite this diagnosis. Some days the statistics feel overwhelming, and I need real human experiences to balance that out. Thank you for sharing this space and for any hope you can offer. Even if you’re still in treatment, hearing how you’re managing day to day would mean a lot. Sending love to everyone in this community.

I would love to hear from this with positive Keytruda stories. Especially earlier stage, 1 and 2. Was Keytruda easier than chemo for anyone?

Seeking advice on aftermath of robotic biopsy scheduled in one week.mobility / normalcy???

I’m here trying to recover as we all are after rats on 8/7 and my back is itching. I’m thinking it’s because of the dressing on my chest tube wound I took off on the 10th. Well it hurts and burns and my husband notices bumps all around my incisions. I call drs and sent pics. They say come in. Come to find out it’s shingles. Mind you I took the vaccine last year. I can’t even think about my healing from rats because shingles pain trumps all that goes with rats. Ugh. Has this happened to anyone? What was your experience?

First of all I want to say how much cancer sucks and i’m sorry for every single one of you that we have to join groups like this.

My mum has stage 4 non small cell squamous lung cancer. She’s only had 1 round of chemo and immunotherapy and within the time of starting to treatment to getting it - the tumour has grew into her heart.

I pulled my wedding forward from June to October this year and I am so scared she’s not going to see it, it’s all she’s spoken about since I planned it.

The doctor told us her heart could give up at any point it’s basically a ticking time bomb, and it will be the heart complications that will kill my mum.

Is there any hope at all? I know probably not for years but is there still hope the next round of treatment will shrink this?

I wouldn’t wish this pain on anyone, and it breaks my heart my mam has gotten cancer a third time (the other two times was breast which she beat)

My heart is breaking.

Hello, my dad had just started his immunotherapy last week after finishing chemoradiation. However, he had developed pneumonitis and the oncologists think it is related to the durvalumab immunotherapy. My dad has been coughing non stop and has shortness of breath after walking up stairs. His next immunotherapy session has been delayed until the oncologists assess how bad the pneumonitis is and if it is manageable...

Has anyone had this experience or knows what will be next? Thanks!

My father, 65/M is diagnosed with stage 4 nsclc recently. No targeted mutation found and pdl was less than 50%. He is going through chemo on weekly basis. So far 7 dosages of nabpalcitaxel 100mg and 5 doses of carboplatin 100mg were given. Doctor suggested for immunotherapy with pembrolizumab. Side effects so far are hair loss, and platelet count drop. Doctor said there won't be any side effects with this but I read some experiences from this group where people had side effects. Has anyone gone through this combination of treatment can share their experiences please?

I was told to post here where is it ?

Not sure if it's the radiation or the chemo (carboplatin/Taxol), but my mom has severe heartburn. She gets pre-treated with Pepcid before chemo, and does take a preventative dose daily, but no luck. Any other suggestions? It is keeping her up all night.