When they diagnose you with advanced lung cancer, of course the first terms you type into your search engine are things like “stage IV lung cancer survival” or “stage IV lung cancer life expectancy.” Your nurses and doctors tell you not to do it, but of course you do it anyway. When you find the articles, of course your eyes scan right past all the caveats and reassurances to the terrifying statistic itself: the median stage IV non-small-cell lung cancer life expectancy is 8 months. The 5-year-survival rate is less than 10 percent.
(The typical caveats and reassurances are, in fact, important, even though at the time they went in one ear and out the other. Those statistics are from 2005, before the newest treatments were available, so the real life expectancy may be longer now. Life expectancy varies enormously with type of cancer, age and general health at time of diagnosis, gender, and other factors. Most importantly you are not a statistic, but a unique human being.)
At first, when people encouraged me to be hopeful, it just irritated me, especially when I learned I didn’t have any of the three major known gene mutations (EGFR, ALK, or KRAS). When people told me their lung cancer survival stories, I would just mentally tick off all the reasons their cases were not like mine. Sure, I’d think, you’re doing great now, but you weren’t stage IV, or your cancer was operable, or you have EGFR and could take Tarceva.
I appreciated having an oncologist who didn’t try to sugarcoat anything for me. Frankly, if Dr. Saraiya had told me I would be fine or should be optimistic, I wouldn’t have listened to anything else he said after that. His estimation, based on all his clinical experience, was intentionally more vague than the statistics because he knows how hard it is to predict anything for an individual patient. He said he usually thinks of a patient’s prognosis in terms of “weeks to months,” “months to years,” or “years to decades.” He thought mine was “months to years.”
I only started believing I might live longer when I began meeting other long-term survivors of advanced lung cancer of types similar to mine. We are scattered all over the world, so the only way to meet them was through the Internet. First, through a friend who works in the pharmaceutical industry, I met someone who was diagnosed in 2007. She was dealing with fatigue, lung conditions, and side effects – but when we connected by email, she was traveling in Italy. ITALY.
She told me about a program called the Lung Cancer Living Room, organized by the Bonnie J. Addario Lung Cancer Foundation in California. It’s a monthly in-person support group, but the meetings are livestreamed, so you can watch them over the Internet. I watched one meeting, and as the camera circled the room, one survivor after another shared how long she or he had been living with lung cancer. It really did something to me, to see a roomful of survivors.
I beat the eight-month mark in August 2013, just as I was discovering my ROS status and beginning to take crizotinib. Now it’s been a year. I am daring to think of myself as a long-term survivor.
Note: Some articles I found helpful in preparing this post include http://lungcancer.about.com/od/whatislungcancer/f/stage4lifeexpectancy.htm, http://www.cancer.org/cancer/lungcancer-non-smallcell/detailedguide/non-small-cell-lung-cancer-survival-rates, and, thanks to new friends on smartpatients.com, “The Median Isn’t The Message” by Stephen Jay Gould: http://people.umass.edu/biep540w/pdf/Stephen%20Jay%20Gould.pdf
thrivingwithlungcancer 
awesome!
I know every cancer is different, but my mom lived for at least 10 years after her breast cancer was deemed stage IV. In that time, she participated in a number of clinical trials that will hopefully help others.
Thank you for posting this. I also really enjoyed “The Median Isn’t the Message.” Thanks for paving the way to survivorhood!
I love this, because it IS annoying when people try to tell you to be optimistic. That really upset me when my father was diagnosed with (a different) late-stage cancer and given a 6-18 month prognosis. I needed people to be real. To say “it might be okay!” felt like a denial of my grief.
But as it turned out, my father made it 24 months past his prognosis (much of that time feeling fairly well and enjoying life), and while it wasn’t the 5-year “survivor” term, it was more than we expected, so we could feel blessed about it. It IS true that each case is very individual.
That said, I hope yours is an unprecedented miracle.
Halo. My name is han. From malaysia. Are you survive ffom lung cancer stage 4. For smoker or non smoker?. My husbnd just now suffer adenocarcinoma srage 4. I want to know how u survive it. Please email me n plz help me.. i’m really down now when he already twice to do prurel effusion.
Han, I am not seeing a way to email you, but I am surviving because I was able to have extensive testing for genetic mutations, and my doctors discovered the mutation ROS1 which is responsive to the drug crizotinib. I also have stage 4 adenocarcinoma, although right now thanks to the treatment I have almost no symptoms. I am a nonsmoker, though I am not sure if that matters. Has your husband had testing for genetic mutations?
When were you diagnosed? My mom has stage IV LC, and is being treated with crizotinib as well. She was diagnosed 03/10/2015.
I was diagnosed January 2013. I started crizotinib August of that year. How is your mom doing? You can message me if you like.
How are u doing now???
My husband in nov 2014 was diagnosed also with stage four lung cancer and has had brain surgery, and gamma knife radiation and is doing chemo now.
Would like to here ur experience
brenda.sommers@hotmail.com
Hi my name is Delores
I had Aedno carcinoma and had left upper lobe taken out
I refused Chemo and it came back in the pleura of my lung
2 years later. Went on Tarceva for about 17 months then went on a study
CO1686 did not ok it Now on Tagrisso I still go to
work. I am scared because always worrying about when it may
Return. I am personally under a lot of pressure and stress
Which is not good. Feb. 8th it will be 7 Years since my operation.
I do have the EFR mutation gene. I hope They will find a permanent
Cure. I know you are scared because so am I.
Thank you for writing this, my mom was just diagnosed with stage 4 lung cancer. I have been annoyed with everyone’s friend of a friend survival stories. Just acknowledge it is a big deal. Your comments helped me put things in perspective.
My mom diagnosed with stage 4 lung cancer also. She’s going for the 3rd session of chemo this sat. It’s hard for me to see her suffering like this. She can’t sleep and she said she feels so weak now. I hope I can do something for her.
My husband has stage 4 LC and just finished round 3 of chemo. He was severely ill for at least one week every time. We noticed a pattern that is worthy of note. After round one, he was diagnosed with a UTI and within six hours of taking antibiotic, his nausea disappeared. The most recent round, he had a touch of pneumonia and within six hours of antibiotic, the nausea disappeared. With both infections, he had no fever whatsoever. It is so coincidental, we believe the infections were the main source of his discomfort. It is just a brainstorming suggestion to consider she may have a similar infection. It is so easy to assume all symptoms are from chemo. It sounds like we are on the same timeline. Good luck and I will keep thinking of you and your mother.
Beth, a thank you for this website is not enough. After my husband was diagnosed in early May, we realized there wasn’t much out there for the day to day living support. When we get a diagnosis, we felt lost at sea and had no idea what the next move was, short of the full itinerary of medical appointments. We just found your posts yesterday. Until then, we were going to start one so people don’t need to reinvent the wheel each time. You have covered everything we could think of. Your contribution fills a huge information gap with all of the details that are equally as important as the medical treatments.
Hi Sandra
My husband was diagnosed also with stage 4 lung cancer.He wss given 8 weeks to live approximately..He had chemo and radio therapy and it didn’t do anything to reduce the tumours He is on Tarceva and its almost 3 years now.His tumours reduced by over half.The oncologist is amazed at how well he is going.Tarceva has a lot of side effects but all can be controlled with the right medications.I was a mess when we first found out it was terminal and told that he only had a short time to live.I have now changed my mind Tarceva is what has worked so far .Its hard to believe that Steve would still be doing so good.Dont give up and think about the Tarceva as the next line of treatment and hopefully you to will get the same results.I know exactly how desperate you feel.And I hope this gives you some hope.
Maree
Hi Irene. Yesterday, Mom was diagnosed with stage 4 adenocarcinoma, a nonsmoker like you. She has just started her first radiation therapy, her second today. Please tell me more of the testing for genetic mutations, ROS1 which is responsive to the drug crizotinib. Gratefully from America’s Queer Capital, Paul
Paul, my first question is where your mom is getting her care? Any thoracic oncologist should be able to help her get testing for genetic mutations such as EGFR, KRAS, and ALK. ROS1 and others are less common, so many people get tested for those three mutations I mentioned first, and then go on to further testing if none of those three are present. A major cancer center should have resources for the more extensive testing, but sometimes one has to be in a clinical trial to access it.
Anyway, ask the doctor about genetic testing right away, and see if you can set up an appointment for a second opinion with a thoracic oncologist at a big cancer center. Sometimes the big centers have options that are not available at other hospitals.
I wrote more about it in this post: https://thrivingwithlungcancer.com/tag/genetic-mutations-in-lung-cancer/
My husband was diagnosed the last week of June. Stage IV lung cancer. He’s had two rounds of chemo, goes again this week. He cannot seem to get consistent pain relief. He feels like the mad chemist. My heart is broken to pcs watching him, knowing there is nothing I can do. Our children are being so brave but their hearts are breaking as they watch him too and struggle to understand what is happening to this once strong, active man. This is a living nightmare.
I am so sorry to hear this! How old are your children? Do you have support from family and friends? I am sending special prayers to your family this morning.
My wife was diagnosed 0ver 7 years ago with stage 4 Lung cancer haver radiation and chemo for 2 years she rides a horse daily and compets in equestrian jumping . Lots of quality of life knowing eash day counts and going strong into the eighth year. Know that do not let the stats scare you keep positive
Thank you, very encouraging.
my father was just diagnosed with stabe IV lung cancer. I would like to know if there is any experimental treatments or anything else to try. What are some other sites to research. My father is not ready to give up and wants to fight. I want to make sure that I research every possible option. Please help with any ideas. you can email me at atc140@yahoo.com if you have any ideas for me. Thank you,
Hello everyone, having come across this site was been so helpful. My mom was diagnosed with stage IV about a week ago. I haven’t stop thinking about her prognosis. After reading all these positive outcome, I feel a relief.
Hi dirty, I was diagnosed in 2010 with stage IV lung cancer and told I had only 6 months tops , I decided that I didn’t like those odds so after 12 months of chemo I was on my own , here I am nearly 9 years down the track ( 9 years in August ) and have been going relatively well , we deal with things as we need to but apart from that I’m just too busy living my life , you have to keep fighting and take ownership of your own body.
Thank you for sharing your story & keep fighting!
My dad was diagnosed with stage 4 lung cancer 6 months ago. He has been zapped with a pattern of chemo and radiation almost back to back and hardly any rest in between. He usually has chemo on Wednesday and with radiation before and afterwards, it hits him hard on Saturday..and he can barely get out of bed. I force him to drink tons of Gatorade and certain breakfast biscuits but he just wants to rest. Brownies seem to help him the most 🙂 I think what keeps them going is a comfortable place to stay, people around them that love them, take care of them and the will to fight. When he first started chemo, he was super weak, dehydrated and had to go get a blood transfusion. He’s losing his whereabouts which I think is part of the treatment but he always tells me, thanks for letting me stay with you and making me comfortable. He’s old school that doesn’t liken people doing anything for him and at this point appreciates it. So I say, help out as much as you can, spend time with them, force them to eat and drink. They’ll love you. t
Thanks for sharing the info. Even my father has been diagnosed with Adenocarcinoma recently and his cancer has metastatized. I am hoping that doctors will be able to treat him well and i’ll be able to see him healthy and smiling again
My Mom was diagnosed with Stage 4 LC yesterday. Her doctor just kept telling her she had pneumonia and bronchitis. After 2 rounds of steroids and 2 rounds of antibiotics, a trip to the ER for more breathing treatments, we finally gave in and she admitted herself. Her family doctor had let this go on for so long that when the ER physicians looked at her x-rays, they were in disbelief. She has no tumors. The next test they will be doing is to try and target the area affected. But if there is no tumors, it must have spread throughout, correct? I’ve tried reading some of these websites but this is the only one that has given me hope. We are now in day 2 of this living nightmare and I am so glad to have found all of you.
My friend Ron Zeller, has had Stage 4 lung cancer for 5 years now. He is 82. Statistics say he should have had a 0% survival rate. Doctor’s can’t believe it and say it is the best behaved cancer they have seen. Has not done any chemo or traditional treatments. They do not work but kill your immune system and other parts of your body. Ron lives inside a commitment of “ageless living” . That world, his intention, spiritually, mentally and physically has given him a new lease on life.
Maybe part, as major part, is that your cells in your body line themselves up with your commitments. Worth exploring.
I agree that the mind and spirit have a tremendous effect on the body, but I’ve known too many people with incredible spirits and deep commitments who have died from their diseases. Perhaps, in addition to his commitment to “ageless living,” Ron also has a rare genetic mutation, possibly undiscovered, that keeps his cancer from advancing.
Thank you Irene, that could be. But they are all explanations and any explanation can fit. A black cat walking in front of you can also be the cause. Explanations just stop us from looking…The truth is we don’t know what the cause is…causes are superstitions and will never know the “truth”. Just keep looking for what works, we may find things to work.
Hello Fellow Warriors, I was diagnosed with stage 1V non small cell lung cancer this past Nov. I decided to go to Mexico for 3 weeks in Jan for alternative treatment which I think was very helpful. The only drug I am taking is Tarceva. I started Tarceva in Feb. and in April my scans were clear even though it had spread to my brain, spine and hip bones! My Dr. here in the states, does not want me to go off of the Tarceva because he said it may not work again. My concern is that it has so many bad side effects, even death. I recently lost most of my hair. Other than that, I feel fantastic. I do believe strongly in having a plant base diet, no sugar or starchy carbs since cancer feeds on sugar. My experience is that the Drs. in the states, do not look at nutrition at all. I am also taking many supplements ( regimen from Mexico) that fight cancer cells, like cu-cumin, enzymes, Vit. C, D etc. Anyway, I just wanted to encourage everyone to look outside of the box. There are many resources like wwwcancertutor.com
Fight On!
Cathy
Hello
my mom is also diagnosed with stage 4 adenocarcinoma of her right lung. She had pleural effusion and they said her cancer is metastatic but it hasn’t metastatised to the bones, brain or any other organs. Just because of the pleural effusion and a few other nodules and also inflamed lymphnodes, we were told that it is inoperable and it is stage 4. Its really a nightmare. She has had 3 rounds of chemo with cisplatin and pemetrexed(alimta)and her 4th round was yesterday. Her oncologist said 4 rounds are enough and the world standard of treating stage 4 is 4 or 6 rounds of chemo. Then she will have a CT scan that tells the doctor what to do next. She might need some radiotherapy then and for maintainance, they will go on pemetrexed every month to keep her cancer in remission. But she had the mutation test and the results were positive for EGFR mutation, meaning she will respond to gefitinib or erlotininb. I wonder if chemo or radiotherapy really work for stage 4 !!!! Shouldnt the oncologist put her on tarceva after her first line treatment is over? My mom is a strong woman living a healthy life. No smokoing and the best and healthiest lifestyle. Eating healthy food and doing excercises. I cant even imagine that I would be losing her so soon with such a devastating disease. Specially seeing the statistics that lung cancer has the lowest survival rates of almost 2 years with treatment and almost 6 months without treatment 😦 Is it possible to have a surgery when there is no evidebce of metastasis? She just has lymphnodes involved in the mediastinum. If the tumor has shrunk after the fourth round, is surgery an option or still the cancer is inoperable? I think it is not metastatic, it is just locally advanced with a 2/5 centimeter tumor and a few other smaller nodules and some lymphnodes where the biggest one was 1/5 centimeters. I think the pleaural effusion was what made it inoperable not the tumor itself. We have such bad days. She has become so weak. She doeasnt eat. She is sleeping all the time about 10 days after each chemo. Before chemo that she had untreated stage 4 lung cancer she was healthier and stronger, going on her routine life doing sports but now … 😦
This is almost exactly my dad’s story. He is at the 4 year mark now. Been on maintenence chemo monthly. In the last year he has had 3 heart attacks, 5 stints, and been diagnosed with copd. We call him the energizer bunny. =) He has taught us all a lot about having hope. I pray you and your family will continue to have hope. Every journey is different.
How’s your mother now. I am currently experiencing a very smiling situation as you.
how is your mom doing? my mom has the same type of cancer and I wanted to see if your mom is on any other drugs besides Chemo
My husband was diagnosed with Stage 4 lung cancer over 10 months ago, it was so advanced by then the oncologist feared he’d had it for some time. His family doctor ignored his concerns and symptoms, and it wasn’t until he started to cough up blood that his doctor took him seriously. So on top of the shock we still feel today, we feel a great deal of anger and injustice. Thank GOD for the his new oncologist, who has been an angel! A life saver!! He’s had 20 rounds of radiation and consistent chemo treatments since last October 2014, though already on a new drug since the others stopped working. His initial prognosis was 1-2 years…we are already close to the 1 year mark. Like one of the posts above by Ki, my husband was also a very strong an active man, worked very hard his whole life, never smoked…our kids, ages 14-20, are amazingly strong but I can see the pain in their eyes when they see their father struggle. He’s only 41. The current ‘biologic’ he’s being given for his treatment is called Opdivo, it was just approved by the FDA for lung cancer just days before he started it. It works more naturally with your body and less harmful than actual chemotherapy. We are praying it’s a miracle drug!!!
Has your husband’s biopsy been checked for the ALK gene or Ros1, etc. Being that he is young and has never smoked he could have the ALK gene as I have. I have been on Xalkori since 10/27/2013 and they haven’t found anything on my ct scans in over a year. I golf 4 times a week and live a normal life. Dr. Says I’m in a deep remission.
I wanted to see how is your husband doing on the Opdivo drug. My mom is on Tarceva and Im on a mission to locate other drugs that have helped others.
My mom was diagnosed with stage 3 lung cancer a year ago, and it had been there long before that but went unnoticed so she didn’t receive treatment right away. When they did find it they went ahead and did two rounds of chemotherapy and as much radiation as they could. In only a matter of a few months it came back again as a malignant plural effusion stage 4 lung cancer. My mom luckily has the EFGR mutation and she was put on tarceva… So far so good. Her last scan came back okay and the cancerous cells that were in the liquid from her plural effusion aren’t there anymore.. However, knowing how serious stage 4 cancer is and how low the survival rate for 5 years scares me very much. Reading these stories gives me a little hope that my mom will be one of the ones who make it to 5 years based on how odd her tumor was behaving from the start and how well it’s responding to the tarceva. It’s very hard to remain hopeful though, I still get worried and anxious and it crosses my mind at least once every single day that I can lose my mom.. Not knowing how much time she has left is very hard and I cry at least once a day thinking about it. I’m only 25 years old, I want my mom here with me.
Hi …i m just 22 yrs old and my mom is just 45 she is also diagnosed wid stage 4 lung cancer dont know wat to do …and i m myself is a mbbs student i m keeping my hopes high and kept my belief alive….let all of us be in highest if hopes….tc care
Reading all of these posts has been so helpful and reassuring! My mom was just diagnosed a week ago with stage 4 nsclc which has spread to the brain. I’m of course freaking out at the statistics and spending hours in front of the computer researching…. any information and personal experiences help so much.
Lacey, i’d lover to know how your mom is doing.
My mom has stage IV nsclc adeno, with brain mets. One primary tumor, two nearby nodes. She had two cyber knife treatments and was supposed to start carboplatin/taxol. The day before her port surgery the called and cancelled it because the lab came back with ALK positive result. Today will be her first day on Crizotinib. Before the ALK result came back, with her situation the onco said her situation is the best one can have with stage 4 because while there are mets, brain is better than anywhere else because they can’t spread from the brain. Anywhere else in the body and they can. While statistics may not reflect it on paper, his experience is that 5 years is safe, and he has seen 20+. Certainly not the norm, but it did give us hope when there wasn’t much before.
We are thankful for the ALK in that it statistically gives her two progression free years without the effects of the carbo/taxol, but with the criz being so new, it leaves us with many unknowns now that there are limited experience years like we had before. We’re also a little anxious aa one of the issues with criz is recurrence of the brain mets. However when she had her ck prior to the ALK finding, they warned us that they would likely pop up again so they would image regularly (every 8 weeks) and just do more ck as long as there weren’t tons of them.
This is all still pretty new to us (she went in to the doc 7/1 for trouble with her speech) which led to the ER, being admitted overnight for tons of testing, and now just finally having all of the info and getting started. She is 73. What I hope you get from my ramblings is that there is HOPE despite the awful things you are finding online. I cried for days when even before the docs gave us a dx we figured it out ourselves right down to tumor classification. The process of getting to the dx and finally treatment has taken a precious month, and the number of appointments is overwhelming, the information can be that too. As scary as the reading was, I read everything I could find, even if I had to look up definitions for terms I didn’t know. I think it helped a ton in being able to better understand what we were being told, and knowing what questions to ask. Now that that part haseries settled down, I’m finally getting to read stories of those who are also going through this, and finding places like this, which I desperately need to get through this.
To those new to this, here is my advice so far. Keep researching, reading, asking questions, remember to breathe (there was a time where I had to do that!), and don’t lose hope. And if you are freaked out at costs, talk to the financial folks at the onco. Criz is horrific at least for Medicare part D, but there are grants and aid, so ask if that is an issue. Best to you and your mom, our family will be praying for yours.
My mother was diagnosed with stage 4 NSCLC with EGFR mutation last month. I feel like I’m still in a nightmare and hope someone can wake me and tell me it’s not real. I’m devastated. My mom is the healthiest person I know – never smoked, never drank alcohol, outgoing, excercisr regularly. She never had any health issue. Then, one day, wham, she found a mass near her collar bone. The oncologist told her she has lung cancer and the cause was simply genetic bad luck. Like most people, I frantically search the Internet to learn more about this horrible disease. The materials are anything but encouraging until I come across this blog. you guys give me a glimpse of hope. I don’t know how my mom’s case will turn out, but I feel a bit relieve after learning there are people out there who have beat the odds. Stay strong. Best of luck to you
hi… i am a servical cancer patient and now my cancer has spread to lungs… any tips forme.. really scared and i am 30 years…
I hope someone is still reading this and can listen or share some positive stories with me. My father 68 years old, was diagnosed with adenocarcinoma in late Jan 2016. The PET and CT showed that it was localized and the tumor was 4 cm, likely stage Ib. A lobectomy was done in late Feb 2016. The pathology report showed that half of the lymph nodes had cancer cells, so he was upgraded to stage IIIa. He had chronic cough after the lobectomy and they couldn’t figure out why (it could be mechanical since several tests show that he had no infection). This chronic cough delayed his post surgery chemo and radiation therapy, but CT in April still showed that the cancer was in the lung. Fast forward to May, he is in the hospital and the CT showed that the cancer metastasized to the soft tissues near the spine, in only one month he became stage IV. The only silver lining is that there is no cancer in the brain according to MRI. Furthermore, he has KRAS mutation, which doesn’t have an inhibitor like some of the other mutations. Most stories I read are about people who responded very well to EGFR inhibitors, but there are not many stories with KRAS mutation. He is starting palliative radiation tomorrow. It just happened so fast. Most people have 1-2 years to process the bad news and eventually accept the fact, but he hasn’t had much time to process.
My nephew was diagnosed with stage4 NSCLC almost 2 years ago, nonsmoker, 44yo. He had whole brain radiation and was on Xalkori which worked for 16 months when it stopped b/c it didn’t pass the blood/brain barrier. He is now on a clinical trial at Mass General and is on Genentech Roche’s Alectinib with Avastin infusions every 3 weeks. He is doing well, just fatigued. He continues to work every day and stays positive. His oncologist, Dr Sequist, has stated that lung cancer will someday be managed care like diabetes is today. He has an awesome support group and quickly realized back in 2014 that his lung cancer takes a village.
I’m in a short I don’t know what to do my dad had gone the rounds if chemo, with a 2 wk everyday raisin Tashkent for the 3 tumors in his head. He has stage 4 non small cell very aggressive carcinoma. Is difficult cause he doesn’t want chemo no more. He says he’s done, it’s time to go. He doesn’t seem to want to fight. I know it’s good choice but it’s really hard to accept this. Can anyone relate on this, is this how anyone else felt. He had hospice coming in sometime this week. Now I don’t know how he feels or what he’s going through only by the visits or phone calls. I thought by sing ask of us his kids he’d reconsider but he’s not……
Hello everyone my father has earlier vocal cord cancer which is operated at TATA Mumbai and now reoccurr and comes to lung side . Doctors said its IV the stage and life expectancy is also less but his willpower make him fighter and four years passed successfully its all doctors of TATA Mumbai and our local medicine oncologist at Kota India,
Hi All,
Just came across this website. Just today 1 March 2016 I’m diagnosed with stage 4 lung cancer. The doctor cannot give me definite answer how I developed it. I’m a non smoker and living healthy lifestyle as possible. For now I’m waiting for some lab test results to determine what type of medicine I can take. Hope you can find time to email me ynneglv@gmail.com do I can have and advise on what’s the best thing I need to do. Thank you so much.
Genny
Thank you for taking time out to do this post. I have been diagnosed with stage four with a 1% survival rate and up to six months to live. I have had only two chemo treatments so far but just the other day my sister who is one year older has been waiting for her biopsy back It seems it is a genetic disposition my father died of lung cancer I have been tested for the ALK genetic mutation but it was negative Do you think I could test positive for other genetic mutations? Thank you for this post it gives people hope God Bless You
I hope someone is still reading this and can listen or share some positive stories with me. My father 68 years old, was diagnosed with adenocarcinoma in late Jan 2016. The PET and CT showed that it was localized and the tumor was 4 cm, likely stage Ib. A lobectomy was done in late Feb 2016. The pathology report showed that half of the lymph nodes had cancer cells, so he was upgraded to stage IIIa. He had chronic cough after the lobectomy and they couldn’t figure out why (it could be mechanical since several tests show that he had no infection). This chronic cough delayed his post surgery chemo and radiation therapy, but CT in April still showed that the cancer was in the lung. Fast forward to May, he is in the hospital and the CT showed that the cancer metastasized to the soft tissues near the spine, in only one month he became stage IV. The only silver lining is that there is no cancer in the brain according to MRI. Furthermore, he has KRAS mutation, which doesn’t have an inhibitor like some of the other mutations. Most stories I read are about people who responded very well to EGFR inhibitors, but there are not many stories with KRAS mutation. He is starting palliative radiation tomorrow. It just happened so fast. Most people have 1-2 years to process the bad news and eventually accept the fact, but he hasn’t had much time to process.
My mom was diagnosed stage 4 NCLC 11/2014. Started her on Tarceva 150mg. A full diet change to raw food,eliminated sugar and serious veggie juicing every day. All tumors gone and no cancer cells detected on previous scans. 7/2016 PETCT shows that there is thickening in the pleural effusion, oncologist thinks it may be coming back. She is 55, never a smoker and always ate good. Any suggestions what plan might work best?
My Mom was diagnosed 11/2014 with stage4 NCLC. (never a smoker) we did Tarceva right away, along with massive over halt of diet- strictly no sugar, meal- vegan. Lots of vitamins. Shes done some cannabis oil as well…we tried a few different types and now are using RSO. The only reason its stage 4 is because its in the pleura effusion. All scans have been coming back as no cancer signs and her original tumors are all gone. Scan 7/2016 showed swelling around her pleura effusion, did a follow up PETCT and it appears the cancer is coming back or is resistant to Tarceva. Getting a biopsy next week to see if shes positive for T7-90 mutation. If she is, there are drugs that help with that. Otherwise her health is perfect. She does have the rash and the dry skin, but a small price to pay. Iron is also low, so shes on natural iron pills to help with that…Its really hard to find a lot of people who’ve made it past the 24 month mark on Tarceva. If you have…please message me, I’d like to connect.
I have a beautiful friend – she’s 20 years old – if you can believe it – Small Cell Ling cancer which has spread to her stomach. She is literally the strongest person I know – still in school, working and living life other than to deal with radiation and hospital visits. Her spirit is as good as one can be – tries not to think about it – she keeps everything inside – but such a caring, good soul – It’s heartbroken – I’m on here my own education and you have given me hope.
Hi, my name is Susan and I was so happy to come upon your blog post. I was diagnosed a little over 3 years ago with stage IV non small cell in-operative lung cancer. I had 6 rounds of CISplatin and gemcitabine. I went into remission and have had 38 treatments of pemetrexed so far.
If you’d like to read my complete story of my battles with breast cancer when I was in my 20’s and then now my battles with lung cancer please follow my link. I hate to leave links but thought that you or your readers may be interested in it.
http://hubpages.com/health/my-battles-with-cancer
Hi Beth and friends,
I had a cough that wouldn’t go away. After four doctor’s visits, three rounds of different antibiotics,
and way too much prednisone, the fifth doctor ordered a chest x-ray, which led to a CT-scan, which
led me to Memorial Sloan Kettering Cancer Center, where the diagnosis was Stage 4 lung cancer,
which had metastasized to the liver and a few other places. I’m a non-smoker, generally healthy,
59, and shocked out of my mind.
I’m happy to find your blog. I am very depressed, and scared. Luckily, testing showed I have an
ALK mutation and I just began taking a chemo pill, the same one you’re on. Have you had any
side effects? I’m also easily fatigued, which feels strange. what gives you hope? Right now,
my future looks bleak.
Thank you for your blog,
Ginny
Hi, Virginia, My nephew was diagnosed w/stage 4 NSCLC, non smoking w/ALK protein. He’s in a clinical trial at Mass General and is on Alectinib w/Avastin infusions every 3 weeks, no chemo. He was on Xalkori for 18 months and has been alive now and doing well for 3 years. The future is hopeful. Don’t give up!! There have been amazing strides made in lung cancer these past few years. Live life to the fullest and keep in touch w/Linnea Duff, a longtime survivor.
Anne Boisclair from NH
My mom has been on chemo pills for 2.5 years. Shes doing amazingly well. She even took a 2 week trip with us to New Zealand. She loves to eat organic food, she juices daily and makes smoothies. She strongly believes that diet along with conventional medicine helps treat cancer.
She was diagnosed with stage 4 NSCL on 11/14- she was never a smoker and ate very healthy. Shes 56 today.
Dont think you future looks bleak- believe that with the right drugs and a twist to your diet, you will live.
I am a stage 4 NSCLC survivor of 7 years. My cancer was discovered during a visit to the emergency room on July 4, 2010, when I went in because I thought I had bronchitis, was coughing up blood. At the time I had mets to the soft tissue on the back of my head and my lymph glands in my chest. Main tumor was (is) in my upper right lung, about the size of a large lime. Was told I was not a candidate for surgery. I went thru a month long round of chemo 5 days a week, while also having a round of standard radiation to the lung and head at the same time. I was sick as a dog from the combination, in and out of the hospital multiple times, was put on liquid nutrition because I couldn’t keep anything down for a while, had quite a few blood transfusions. My cancer responded well, and the doc then put me on a maintenance program with a different chemo drug once every 3 weeks. Had to change it to every 4 weeks because my body couldn’t recover enough in 3 weeks and my bloodwork numbers were to low, had to keep getting transfusions. During this time I also had multiple CyberKnife (stereotactic radiosurgery) treatments to the lung. Yay I was in remission! In August 2012 I experienced sudden “collapsing” of my legs. It happened multiple times, for no reason. Just walk across the room and my legs would “turn off” for a split second, causing me to fall to the floor. So scary! CT scan and MRI of the brain, sure enough I had a tumor in my brain. It was pressing on the area that controls the legs. Luckily for me, it was operable. It was removed in Sept 2012 at Roger Williams Medical Center by a well respected neurosurgeon from Providence RI, who is also a clinical instructor at Boston University of Medicine. After about 6 weeks I resumed my chemo regime, and had multiple CyberKnife trearments to the brain to ensure that there was no cancer left in that area. 7 months later after a follow-up MRI, I was told that there was “something” showing up in the exact same location as the tumor had been and that I needed repeat brain surgery. Luckily the surgery in May 2013 revealed that the shadow on the MRI was scar tissue from the CyberKnife treatments and not a regrowth of the tumor. I have since been in remission. At my pre-chemo doctors visit this morning, the doctor asked me if I want to continue on with the chemo, or if I feel confident to discontinue them, as I’ve been 4 1/2 years in remission. When I asked him how long others have stayed on the maintenance chemo, he said that there are no others who have been on it as long as I have. When I pushed for more info he admitted that as far as he can see thru his research no one else has survived this long since initial diagnosis of stage 4. The chemo has been my crutch for so long, I’m afraid to go off of it. He also said that standard protocol is to remain on it if I am not experiencing severe side affects, but it’s my call. I don’t know what to do.
Are you in any kind of online support group for long-term survivors of cancer? You may be able to connect with others who have faced similar decisions on smartpatients.com, cancergrace.org, or inspire.com. If you discontinue the chemo and have a recurrence, can you go right back on it?
My mom was diagnosed on 11/14 and is doing very well. Shes currently on Tagrisso (targeted drug). She took Tarciva for 18 months or so- it stopped working and the cancer returned- although not as spread out as it was before. She recently returned from a trip to New Zealand. Shes well and she keeps eating organic, raw food…avoids sugar.
Where is the blog since April?
I barely blog anymore, but I’m doing well! I’m trying to finish a dissertation and hope to do more blogging after I finish.
I was diagnosed with stage 3 lung cancer back in 2010 and have since moved to stage 4. I have a stent now running beside my trachea as I have had several tumors in my throat , I’m looking to begin Immunotherapy within the nect couple of months .