Lung Cancer — Cancer Survivors Network https://csn.cancer.org/ Sat, 14 Mar 2026 20:35:52 +0000 en Lung Cancer — Cancer Survivors Network treatment options https://csn.cancer.org/discussion/147944/treatment-options Sun, 07 Aug 2005 23:03:23 +0000 Lung Cancer kastl 147944@/discussions Recovering from treatments https://csn.cancer.org/discussion/329879/recovering-from-treatments Tue, 23 Dec 2025 14:36:31 +0000 Lung Cancer AnnaGraham 329879@/discussions I was diagnosed with Stage 4 lung cancer with the EGFR mutation in July of 2025, the same month I turned 57. I had mets to my back, liver, lymph nodes, and brain. I take Tagrisso daily. I had four rounds of chemo with Alimta and Carboplatin, then another two with just Alimta. I had 10 radiation sessions on my back and, because of Tagrisso, was able to avoid brain radiation.

My most recent scan showed the metastases are no longer active and the main tumor in my right lung has decreased significantly. I'm still figuring out what this means overall. I had just found a sense of peace about having a terminal illness, and now I'm trying to think through how to recover enough to return to work.

I was on the steroid Dexamethasone for about four months, which caused pronounced muscle weakness, especially in my legs, and facial swelling to the point of pain. I've been off the steroids for almost a month and the swelling has gone down, but I still need a walker and, for anything more than about 100 feet, I need a wheelchair.

Has anyone else here experienced something similar - recovering from the treatments and finding a good quality of life after?

]]> Connecting with Grandkids https://csn.cancer.org/discussion/329969/connecting-with-grandkids Thu, 05 Feb 2026 19:49:35 +0000 Lung Cancer cmpattberg 329969@/discussions Hi.

I'm stage 4 non small cell lung cancer matastised to my brain. Cannot travel much anymore. And my posterity is scattered around the globe. So Grandma and I started to get picture books from the library and read/record onto YouTube. Great way to stay in front of the little ones so they don't forget us. And it keeps my mind off my cancer while doing it.

Come check it out and let us know what you think.

Thanks.

…Craig & Judie

]]> Grandpa's Porch https://csn.cancer.org/discussion/329967/grandpa-039-s-porch Thu, 05 Feb 2026 00:30:06 +0000 Lung Cancer cmpattberg 329967@/discussions

I wrote my way through cancer—85 poems in total. I'm now sharing these recordings to remind my fellow survivors that we are stronger than we know. If you need a friend's voice today, feel free to listen to my journey here.

Grandpa's Porch

]]> Entrectinib now for about 1 month... https://csn.cancer.org/discussion/329361/entrectinib-now-for-about-1-month Tue, 13 May 2025 13:25:51 +0000 Lung Cancer cmpattberg 329361@/discussions In late 2020 they found stage 3 lung cancer. Did chemo, radiation and followed up with immunotheraphy.

On March 27th this year I had surgery to remove a tumor pushing against my brain.

Has anyone else been prescribed entrectinib. Just wondering about side effects.

Thanks.

]]> So many questions https://csn.cancer.org/discussion/329891/so-many-questions Thu, 01 Jan 2026 20:24:03 +0000 Lung Cancer DonnaLynne 329891@/discussions I am 70 (that number still surprises me) and was diagnosed with stage 4 sclc in early November of this year. The diagnosis knocked me sideways. If it weren't for my husband and 2 daughters I would still be reeling. They kept me on track with my meds and treatments. They have gone to every meeting and treatment. But there are questions I don't always think to ask and some I don't want to discuss in front of my family. One is about my hair - I know this may sound vain but losing my hair was slightly traumatic considering everyone always complimented me on my hair. But I'm ok with losing it. The only thing is that not all of it has come out. I have enough left to make shaving my head feel odd. But I think that's what I'm going to do.

My next question is the main one. Is this it? I was told I had 1 to 1 1/2 years left. Is the remainder of my life going to be a series of the side effects from the chemo and then a period of side effects without the chemo? Because, frankly, neither option is appealing. But my family has kept me going. I just would like to know if there will be good days. Maybe 1 or 2 a month? Is there anything I specifically I should do to help with side effects?

My main side effect that bothers me the most is the mouth sores from the chemo. Mine weren't exactly sores but the entire inside of my mouth felt like it had been scalded. It was misery. Are there any tips I can do to help? It's really difficult to keep my strength up when I can't eat anything.

I know this is rambling and I apologize but if anyone can help with any suggestions, I would be so grateful

]]> Alternative and out of country treatments for stage IV NSCLC ALK+ve https://csn.cancer.org/discussion/329895/alternative-and-out-of-country-treatments-for-stage-iv-nsclc-alk-ve Mon, 05 Jan 2026 17:48:32 +0000 Lung Cancer agbrockway 329895@/discussions In the fall of 2019 my 25 year old daughter stumbled into a Vancouver hospital so short of breath she could barely walk. A week earlier  she had been diagnosed with pneumonia and placed on antibiotics and puffers based on low oxygen readings and an xray that the doctor said was "the most unusual xray he had ever seen." I asked them at that point to check for a blood clot (I'm an ER doc) but they refused saying women her age don't get blood clots(patently untrue) The doctor declined to talk to me. When she went back she was diagnosed with a large pulmonary embolus (blood clot) and a CT chest showed a likely cancer. Several days later and after multiple physicians she was diagnosed with Stage IV NSCLC with mets to bone and brain.  A whirlwind of activity followed as we got her home to Ontario and the team at LHSC diagnosed her with the ALK+ve variant. She started alectinib and had a dramatic and profound response with no sign of active disease after 6 months of treatment. She did very well until the fall of 2023 when surveillance MRI showed recurrence of her brain mets. She underwent stereotactic radiation with some response. Here meds were changed to lorlatinib and according to her last MRI the five lesions in her brain are either shrinking or not changing - largest is 6mm. She continues to live her best life and remains symptom free. She is an active young lady, works, goes to the gym, hikes & camps and has just moved in with her new partner

The reality about kinase inhibitors is that at some point most will stop working. So in trying to stay one step ahead - Does anyone have information about cutting edge treatments that may only be available out of country - I include the USA in that group as we live in Canada

Thanks

AGB

]]> Survivors where are you https://csn.cancer.org/discussion/327351/survivors-where-are-you Sun, 26 Nov 2023 21:56:18 +0000 Lung Cancer Bri1A 327351@/discussions I want to know how long everyone is surviving. I was formally diagnosed at 37, luckily with stage 1a. I had no symptoms and they found my cancer by mistake. I am now in remission for one year and I'm having these thoughts of how long will I live after this? I know there's no guarantee. But I'm curious of how long people survive after having lung cancer and a lobe removed. The statistics online don't help. I know no one in person who has survived lung cancer. I'm feeling very alone. I had a panic attack before my one year CT scan. People tell me my fears lessen with time... but right now I just want to know if it's possible I still live a long life and get to see my children get married and have their own families? And will I make it to retirement with my devoted husband? Could I live another 40 years? Is it possible. Give me hope survivors.

]]> Pneumonectomy remorse https://csn.cancer.org/discussion/329842/pneumonectomy-remorse Sun, 30 Nov 2025 16:38:55 +0000 Lung Cancer GGF 329842@/discussions InFebruary of this year, a large (approximately 6.5 cm) tumor was discovered in my left upper chest. A biopsy performed by Hospital A showed it to be Squamous cell cancer (NSCLC). The surgeon at Hospital A described it as operable, a difficult operation but one he could do. To make surgery easier, it was recommended I receivechemo/immunotherapy to shrink and possibly kill the tumor. Afterabout three rounds of treatment, I decided to seek a second opinionat a hospital known for cancer care, Hospital B. The surgeon atHospital B, was not so optimistic and said he might have to removethe lung but he would not know for sure until “he got in there.” I received four rounds of chemo/immunotherapy but I decided to gowith Hospital B for the remainder of my cancer treatment, due totheir reputation and professionalism. I believed surgery was the“gold standard” for cancer treatment and offered the best chance for long term survival. The team at Hospital B also recommended surgery over other treatment options. Going into surgery I secretly hoped the lung could be spared but instead, I received a pneumectomy. This was an indisputable medically sound decision. The tumor wasfound to have been completely killed by the chemo/immuno therapytreatment and the lymph nodes were not cancerous. The procedure wasconsidered a success and I was deemed “cancer free”. Now I face a permanent reduction in pulmonary capacity and fatigue which I didnot have before. I am told the fatigue will improve with time. Ihave to be extremely protective of my remaining lung, wear masks whenaround others, stay up to date on all vaccinations, and face thepossibility that any respiratory illness would be extremelydangerous, if not fatal. Though a moot point now, I am bothered by“what if” questions. For instance, what if I elected to endtreatment with the chemo/immuno therapy? At 72 years old and withthe average life span being 76, did I really gain enough to offsetthe trauma of surgery and diminished quality of life? Given theirdesire to have “clear margins”, I know the pneumonectomy wasmedically justifiable without a doubt, however was it the rightdecision for me? I would appreciate the opinion of others.

]]> Hi everyone https://csn.cancer.org/discussion/329738/hi-everyone Sat, 18 Oct 2025 22:05:30 +0000 Lung Cancer ethan31kayla35 329738@/discussions Idk where to start. But I will start with please pray for my family. My 31 yr old boyfriend was diagnosed with 3 different cancers almost 3 yrs ago its in his brain lung an bones. He has stage 4. He had full brain radiation about a yr ago. He struggles with remember anything . He thinks he can still do everything like before an when his sickness stops him you can see his spirit crush little by little. He was always a hard working able bodied adult. He provided loved an took care of us all. He started chemo 8 days ago. An he says everyday seems worse. I pray all the time. We all do.. I ask people where to help find things or how I can get medical equipment needed if his medicaid dont pay for it. I am working as much as I can in between caring for him our kids an drs.apts its hard to be there everyday. An we are struggling bad. I just simply need help finding resources to help with medical things everyone I call won't help an sends me in a circle which is even more frustrating. I love this man with all my heart an it hurts when he needs something an I cant help him with it. I am so greatful to be apart of a community that are facing the same struggles we are. I just feel alone an lost.

]]> I need help with early symptoms of pancoast cancer https://csn.cancer.org/discussion/329748/i-need-help-with-early-symptoms-of-pancoast-cancer Thu, 23 Oct 2025 00:21:20 +0000 Lung Cancer JasperDavid 329748@/discussions Hi, I don't know if these are symptoms of a pancoast tumor or just joint pain from everyday activities.

My pain is in my right shoulder joint and feels like a rotator cuff injury. It started 3 weeks ago and hasn't gone away. It only hurts when i move my arm around, mainly when i lift my arm straight out to the side. Some days feel better than others. Sometimes the outer muscle beneath the joint feels sore but not every day.

Any help is greatly appreciated! Thanks so much!

]]> Sharing...good...or bad? https://csn.cancer.org/discussion/329501/sharing-good-or-bad Mon, 07 Jul 2025 03:54:44 +0000 Lung Cancer Hope66G 329501@/discussions Hello,

Have you encountered any family member(s) who grill you about your condition, your treatments, etc. or the person you're caring for, in such a way that after the conversation, you feel…worse? I am wondering how to shut down such discussions, w/o being rude. Any tips? Can you relate? Thanks…

]]> Anxiety? https://csn.cancer.org/discussion/328419/anxiety Sat, 24 Aug 2024 14:57:31 +0000 Lung Cancer Grizzly 328419@/discussions How do you deal with the anxiety? I am feeling so out of control. I am normally able to face critical issues and deal with it, including my own past medical issues, my husband's critical health issues, and even unexpected deaths in my immediate family. But this time, I am a wreck… I shake constantly. I get angry at the drop of a hat. I whine all the time…( and I am NOT a whiner!). I dont understand why having stage 2, no small cell cancer can be getting to me this bad. If you've experienced this, can you tell me how you deal with it?

]]> Not eating https://csn.cancer.org/discussion/329717/not-eating Mon, 06 Oct 2025 14:32:30 +0000 Lung Cancer slmcclister_12 329717@/discussions My husband has been diagnosed with stage 4 non small cell lung cancer that has spread to his bones. He was put on capmatinib. From the last pet scan the drug was working but one of the side effects of the drug was swelling. He went to his family doctor about the swelling and the family doctor advised him to stop taking the drug until after Christmas. I’m afraid that he won’t be here that long. He started taking Ivermectin but I don’t know if that is working. He is now to the point where he does not feel hungry and has to force down food. He has lost all interest in everything he used to like to do. I don’t know what to do at this point.

]]> Bronchoscope result https://csn.cancer.org/discussion/329554/bronchoscope-result Sat, 26 Jul 2025 20:40:03 +0000 Lung Cancer acrwg 329554@/discussions 8mm spiculated nodule identified on CT Feb 2025. RLL. Also 4mm fissural nodule LUL. Bronchoscope at Mayo Feb 2025 on 8 mm nodule performed. CT spin technology confirmed needle in left inferior edge of lesion. All path results from procedure showed no evidence of malignancy nor lymphadenopathy.
no other source of nodule identified (infection). Deemed inflammatory by pulmonologist.
Repeat CT in May 2025 showed both nodules stable and no growth. Next CT in September 2025. Could these still be malignant or benign process?

]]> Lung Cancer (2b) ten years survivorship https://csn.cancer.org/discussion/329630/lung-cancer-2b-ten-years-survivorship Mon, 25 Aug 2025 14:31:44 +0000 Lung Cancer [Deleted User] 329630@/discussions First and I guess mostly, my dear mom has survived as stated above. It was a wild ride and there are some really good and still challenging days following her four surgeries, resection, 2 hips, and extensive node verification + 3 rounds of intense chemo workups. I am working to get her involved here eventually.

In any event, as her caregiver I have seen a lot. Following covid 19 whirling around it is like impossible to get in touch with old colleagues who from a research standpoint -I think have me on a sort of block or something odd. Literally cant find on socials etc. Like they hate my mom or something, lot of folks from China, obviously Wuhan etc.

I excelled and graduated the school of business and did the school of education creditwork for a MBA at SUNY Albany graduating well received. My colleagues benefit from their ed and I am not.

Mostly a word of caution for doing what is right if you find yourself like my mom or I.

]]> I'm trying to cope. https://csn.cancer.org/discussion/329311/i-039-m-trying-to-cope Tue, 29 Apr 2025 02:10:00 +0000 Lung Cancer Oscar3D 329311@/discussions After a car accident in September of 2024, scans revealed brain swelling from a 3.4cm tumor in my right frontal lobe. Further scans revealed a 5.3cm tumor in my lung. The lung tumor was identified as small cell neuroendocrine cancer. I had a craniotomy in October of 2024 to remove the brain tumor. Following a brief recovery period, I was started on 4 rounds of I.V. chemotherapy and 33 sessions of targeted radiation for the lung tumor. I kept getting good news and seemed to respond well to the treatments without many side effects. Shortly after those sessions ended, I was put on 10 sessions of brain radiation to eliminate any potential microscopic cancer cells. All of my hair finally fell out. I had felt pretty hopeful with all of the good news from the scans, and still feel that way most of the time. I'm having a very hard time quitting smoking, even despite going through what I have. I feel shame and anxiety. I feel like other people think I'm getting what I deserve. Maybe that's what I think about myself, and I'm just projecting that onto everyone else. Everyone around me has been supportive, so I have no reason to think that way. I've recently been able to spend more time alone at my house, which has caused me to reflect on everything that's happened in the last 8 months. Even though I've been getting nothing but good news, relative to the situation, I keep dwelling on death. I feel a lot of fear and anxiety. I'm hoping that sharing my story and connecting with people who have shared similar experiences will help with my mental state.

]]> Irinotecan and diarrhea - Any advice? https://csn.cancer.org/discussion/328893/irinotecan-and-diarrhea-any-advice Sun, 12 Jan 2025 15:41:23 +0000 Lung Cancer Jeremiah16 328893@/discussions I previously had irinotecan treatment but it caused a lot of damage with diarrhea and then colitis. We took 2 moths to recover. Lower dose irinotecan was thought to be still benenificial and we had a second opinion on that from Mass General Brigham. I'm on lomotil but I'm still having regular diarrhea. Any advice on what to try? I really need help. Thanks.

]]> Lung adenocarcinoma with lung metastasis stage 4 https://csn.cancer.org/discussion/329553/lung-adenocarcinoma-with-lung-metastasis-stage-4 Sat, 26 Jul 2025 17:02:05 +0000 Lung Cancer OneDayAtATimexxx111 329553@/discussions Hello all haven’t posted a new post since March. I was diagnosed with stage 3a lung adenocarcinoma in January 2025, I had chemo/ radiation in March then had my follow up in May. My lung tumor shrank considerably and my lymph nodes were clear, but there were several growths in my liver. I just had an MRI on July 23, and have 2- 3 cm tumors, one on each side of my liver, which puts me at stage 4 b or 4 a not sure till I see my oncologist next week. I have the egfr gene mutation, so tagrisso is an option, but I don’t know what else they may want to do. I just finished chemo radiation at the end of April, and it’s only July, so I’m extremely anxious as I still haven’t completely got over my prior treatment?. Any thoughts, information , or good wishes would be appreciated, thank you , one day at a time, Dave

]]> Herbs and Supplements https://csn.cancer.org/discussion/163665/herbs-and-supplements Sun, 23 Nov 2008 05:02:19 +0000 Lung Cancer catcon49 163665@/discussions Any one had a rare side effect called Triple M overlap syndrome (TMOS https://csn.cancer.org/discussion/329544/any-one-had-a-rare-side-effect-called-triple-m-overlap-syndrome-tmos Tue, 22 Jul 2025 21:33:38 +0000 Lung Cancer ECT52 329544@/discussions I’m looking for any one who’s has had a rare side effect from immunotherapy called Triple M overlap syndrome (TMOS)

Patient is stage 4 NSCLC with metastasis to bone.

]]> Lung biopsy https://csn.cancer.org/discussion/329540/lung-biopsy Mon, 21 Jul 2025 17:57:37 +0000 Lung Cancer tazjones51 329540@/discussions e720488538c65987c308c9cca1a1890b_0.jpeg http://Hello everyone, I'm a 51 yr old female. And I'm having my first lung biopsy on Friday 25. For the last couple of years I have been having problems with my legs and feet swelling. Sometimes they swell so bad it feels like my skin is going to burst and I can barely walk. My knee's are swollen months at a time . I was in the hospital for a week in February. They ultrasounds checking my arteries checking my joints CAT scan. My primary care had just referred me to a lung specialist and they was getting ready to send me for a CAT scan but they got the cat Scan from when I was in the hospital in February and decided to go ahead and schedule my biopsy. I'm kind of scared. I have been an active cigarette smoker since I was 25. Went six years without smoking (that was involuntarily). Used to smoke almost up to two packs a day, but now a pack less me two to three days. I'm asthmatic and COPD. I have a chronic cough and I have constant cold in my chest whenever I get sick it's going to turn into walking pneumonia. But the thing that scares me the most is like when they say they have did surgery on someone and have open them up and they've had cancer and because they open them up is spread. That what gets to me the most experience I could be shortening my time with my children and grandchildren. My last 4 years have been a tailspin for me with loosing my second oldest my sister next to me and my husband. I have been reading some of the post trying to get some reassurance but I don't know if that was a good idea or not I keep seeing everyone saying they having so much pain and I just don't know. Not really sure if I want to go through it or not just don't want to add anymore turmoil or pain to my children Just needing some advice Thank you and God bless Taz Jones]]> cbd topical cream https://csn.cancer.org/discussion/329192/cbd-topical-cream Fri, 28 Mar 2025 13:51:51 +0000 Lung Cancer carolb447 329192@/discussions Has anyone tried cbd cream to help manage nerve pain, and did it work?

]]> Lung cancer survivor https://csn.cancer.org/discussion/328837/lung-cancer-survivor Fri, 27 Dec 2024 04:57:03 +0000 Lung Cancer windbus340 328837@/discussions Diagnosed with NSLC in 2019, staged 3d . After oral chemotherapy, Alecensa to shrink cancer spread, followed by radiotherapy , chemotherapy and immunotherapy I have been cancer free for 6 years now. Stay positive and hopeful.

]]> Post Tagrisso*** https://csn.cancer.org/discussion/329481/post-tagrisso Tue, 01 Jul 2025 08:58:05 +0000 Lung Cancer Hope66G 329481@/discussions Anyone try Tagrisso and then found out it stopped working? What did you do then? Thanks.

]]> Looking for others with NSCL EGFR mutation https://csn.cancer.org/discussion/329459/looking-for-others-with-nscl-egfr-mutation Fri, 20 Jun 2025 23:55:15 +0000 Lung Cancer Julie02 329459@/discussions Hi I am 43 years old stage 4, Korean. I am looking for anyone going through the same situation. I am super lonely. I need friends.
I live in PHX. Please contact me if you know anybody. Thanks advance.


Julie

]]> Looking for others with NSCL BRAF mutation https://csn.cancer.org/discussion/329289/looking-for-others-with-nscl-braf-mutation Sat, 19 Apr 2025 17:30:31 +0000 Lung Cancer barbra1999 329289@/discussions Hello,

I was just wondering if anyone is on Braftovi and Mektovi and how is your experience with these medications. I have been on them for 1 month now and have had quite an improvement in my symptoms. I do have fatigue and some muscle pain in the evenings, but not enough to stop my day. Just wanted to connect with people in the same situation. I have looked and unable to find a support group for this in my area. Thank you!

]]> Immunotherapy for Non-Small Cell Lung Cancer using DNA Sequencing? https://csn.cancer.org/discussion/329433/immunotherapy-for-non-small-cell-lung-cancer-using-dna-sequencing Mon, 09 Jun 2025 04:06:09 +0000 Lung Cancer surf2kona 329433@/discussions My mother-in-law who is 84 years old was diagnosese with Stage 4a non-small cell lung cancer. Its in the right lung and in some lymph nodes they tested. Nothing in the bones or brain scans. we are still waiting on DNA sequencing.

Does anyone know of a good sources for papers or information about immunotherapy treatments that work for specific DNA types?

]]> 4 nodules and swollen lymph nodes https://csn.cancer.org/discussion/329416/4-nodules-and-swollen-lymph-nodes Sat, 31 May 2025 15:16:21 +0000 Lung Cancer Indysilver 329416@/discussions I've had a chronic cough for a couple of years, and my back always hurts (assuming from an old injury). I asked my Dr. for a chest x ray just to see if anything's going on. I've worked with asbestos 21 years. I'm not even 40 yet. When they called about my results everything started moving quicker than i'd ever imagined. They ordered an MRI the next day, and that's when they found 4 nodules within both lungs, and 3 swollen lymph nodes within my lungs. The largest nodule is 2.8cm. I go for my PET scan next week and i'm stressed out to say the least. As another person commented, 90% of nodules are non cancerous. I'm just worried with history of lung cancer in my family and my risk factors with work. Just asking for a little hope and cheer. Praying for all the current fighters and survivors out there fighting the fight.

]]> Nodule https://csn.cancer.org/discussion/329001/nodule Fri, 14 Feb 2025 05:32:39 +0000 Lung Cancer markandrew 329001@/discussions just was told 1.3 cm. Right upper lobe nodule was “ nothing, probably just infection “

I had no sign of lung infection ( fever, elevated WBC, etc)

I think Dr is being too cavalier about it- what do other people think?

]]>