Please let me know if there are ANY survivors out there with Stage 4 Lung Cancer, (Terminal)taking radiation.
God Bless All
I am 51 and a Stage IV-A non small cell lung cancer survivor. I was diagnosed 12/8/2002 at age 43 as having Stage III non small cell lung cancer.
They began a thoracotomy the day after Christmas 2002 on my right lung and pulled out without removing any of the lung having found it was spread to lymph nodes and on trachea/esophagus and re-staged it as Stage 4A. I began combined aggressive chemo and radiation the beginning of January 2003 and after about 1 1/2 - 2 years of three separate rounds of combined radiation and chemo, I have now been in remission almost 6 years.
Due to the aggressive nature of the treatment and damage from a new chemo drug, I have been on oxygen 24 hours/day for about 6 1/2 years. The new drug also damaged my good left lung. By no means am I complaining about this, I thank God for putting the right medical professionals on my care and realize that without this aggressive treatment I would not be here today.
I can't believe that I am just now discovering this site - of course I didn't really search as much as I could have. I am searching now primarily because I am in the process of being evaluated for Lung Transplant. The hospital I am with does more lung transplants than any other in the country along with many of the more difficult ones. Having said that, they have not done one on a stage 4 cancer survivor.
So I am asking you all - are you or do you know of any lung cancer survivors who have later had a lung transplant - I'm curious of any stage but most curious of stage 4.
Thank you, and I wish you all continued improving health.
Does anyone has a cooking guid for cancer patients. AS well as you, my brother was diagnosed on March 17 with lung cancer that spread to his brain. They did radiotherapy, then chemoteraphy with pills and he is doing all kind of natural diet. He changed his life radically to help himself. I am sure there is good days as well as bad, my sister in law is running out of ideas to cook for him, plus the nausea that he feels. He was taken back to the hospital today, because of not feeling good. We all pray, and be confident about. I will appreciate if someone has an idea of food to cook.
I am so happy to hear that you have been in remission for over 6 years. This is awesome news.
My mother who is 55 years old was recently diagnosed with Stage IV non small cell lung cancer, specifically squamous cell carcinoma. She never smoked a day in her life and needless to say this news was devastating to her and to our family. It was discovered when my mother starting losing her voice and was coughing in June of this year and the cough became progressively worse. It wasn't until she was sent to the ER for difficulty breathing was when it was discovered that she had lung cancer and it had spread to her trachea which blocked majority of her airway. Her left lung had collapsed and she also had pnemonia. We've been told by our oncologists that it's inoperable given it's fairly extensive in her trachea, left bronchus and left lung and that it originated from the lung. She's had 5 days of palliative radiotherapy (very small dose to say the least) and was told to wait at least 4 weeks before they can assess whether or not chemo is an option for her and that's if the tumour has responded to radiotherapy. I just hate the fact that we're being put in a holding pattern for now. It seems they've already given up on my mom =( but of course we haven't!!
Recent CT, MRI and bone scans show as normal (so far) so it doesn't look like it has spread to other areas other than a small lesion on her right lung which is being monitored during her next CT scan in a few weeks. In reading your post, I understand the lung cancer had also spread into your trachea and was wondering what treatments you were given and where did you receive the treatments, since my mom's condition sounds fairly close to yours. Our oncologists have said that it's fairly rare to see it grow into the trachea. Were you also diagnosed with NSCLC squamous cell carcinoma? I would really appreciate your response and can be reached directly at email@example.com.
Keep fighting the good fight. My thoughts and prayers are with everyone here. You've all been truly inspirational to me and my family.
TO ALL: I've been reading all the posts in this forum and didn't find any others diagnosed with non small cell lung cancer, in particular squamous cell carcinoma. If I missed it, my apologies, but I was wondering what treatments and where you/your loved one had undertaken? Appreciate you getting back to me. Thanks.
Has anyone been to Sloan Kettering? Have you had success?
Sloan Kettering highly regarded and on same level as MDA. Try Vanderbilt
Vanderbilt-Ingram Cancer Center brings together the clinical oncology programs and the cancer research, education, and outreach activities of Vanderbilt University. It is a leading oncology treatment center that serves patients in Tennessee, Kentucky, across the Southeast and beyond
Dear Members: Dad has been diagnosed with Stage 4 lung cancer. Looks like cancer is contained to one lung but due to his lung health, surgery and chemo are not an option. Radiologist gave option to start radiation just about every day for 6 weeks, or wait 3 months to take another PET and start Radiation then, if necessary. They opted for the latter. He is an 8 year survivor of Bladder Cancer and does not want to change his relatively normal way of life for now. Any thoughts on my parents decision?
glad you are doing well bless u
On Friday my dad was diagnosed with lung to brain cancer (many spots one larger tumor). No biopsy yet, that's Monday. The oncologist came in and asked a bunch of questions, looked him over a bit and said "two weeks without treatment." He'd been falling progressively for a few weeks (loss of balance) and had been treated fro Pneumonia a few months ago, which I guess kept the docs from seeing the cancer in his lungs. He had colon cancer 5 years ago and was supposedly cancer free, though the docs think maybe they were mistaken. They talk like they might do OT with him and wait for radiation... doesn't that sound dumb? It does to me. If radiation will help with the pressure on his brain and might slow things a bit, shouldn't we do that first.
I'm really ready for some kind of straight talk. But every time a doctor comes in, I just get worse and worse news.
Thanks for the hopeful stories. We all are trying to be positive, but really, my dad is the most positive person in the room.
If you have a similar story, can you give me advice on things to ask for or about.
God bless you. I will keep you in prayer. I think your post is brave and you should do all the things you want to do before it's to late. Sounds like you are being realistic, but stay positive.
hello, newbie here.
Just wanted to recount my experience. My 86 yr old mum was diagnised with terminal small cell lung cancer Nov 2011. Chemo was offered as a pallitive measure only. She was told she had about 6 WEEKS 12-18 with chemo.
She has never smoked although must have been a passive smoker like so many of her age and has always been fit and healthy. Drs only discovered cancer due to routine chest x-ray.
She declined chemo and we all prepared ourselves........
It is now October and she is still going strong with only the normal aging symptoms!!!!
She seams to have put it out of her mind and dissmisses it when we talk about it. She refuses to go back to the oncologist.
We are all baffled...did the drs get it wrong? Has she cured herself?
Its a good thing, of course but also it was a terrible time...My brother pooled his savings to bring himself and 3 children over last christmas from new zealand,and everyone was told of mums iminent death etc etc.
Can anyone tell me this isnt unheard of....
Hello everyone - Just want to send out some encouraging words - I'm 39 diagnosed with Inoperable, Incurable, Termainal Stage IV Small Cell Lung Cancer in April 2010. I've had brain surgery to remove tumor in April 10, Radiation to my whole brain in May 2010, 1 chemo treatment from June to Aug 2010 tumors resolved both in my brain, lungs lymphnodes in left lung. Off from treatement from Aug to Dec 2010. Re-scanned MRI, PET and CT beginning of Dec. all the tumors came back worse then before. 1 in left upper lymphnode, 2 in lower left lung and nodules in middle chest followed by 3 new small tumors in brain. Started immediately with new drug Topotecan received new scans in Feb 2011 to see if Topotecan is working it's not. Was refered to Gamma Knife for brain Mets and the Gamma Knife doctors found 12 tumors on Feb. 24th, 2011. 6 on right side and 6 on left side of brain. 3 large mets over 1.5 cm. They were able to target 6 on the right and I'll go back in a couple of weeks for the other 6 on left side of brain. Very blessed that I was referred to Gamma Knife doctors I believe they have saved my life for now! My local oncologist and radiologist/pathologist were VERY WRONG on my brain tumors and MRI Scans. They said 3 and I find out I have 12?? I was not a happy camper when I found out. Gave the Oncologist a piece of my mind. Will no longer return to that Oncologist and or Radiologist place for my scans. This has taught me that I need to take responsiblitly and stay on top of everything. My LIFE is precious to me and unfortuntaley not to some of the medical professionals. I've learned some oncologists don't look at the bigger picture and just tell you what you want to hear or just follow the basic medical protcol. I'm not allowing this any longer. I'm checking into experienced Oncologists that handle my specific cancer. Looking at going to Stanford or Loma Linda where I will be a top priority and be with medical professionals that are interested in finding a cure or helping my survival rate. If you have any information I'm very interested. I'm 39 and I'm not having any complications, my weight is good, my health other then the cancer is fairly good, I still go to work, I'm fairly active need to walk more. My diet is excellent no problem eating. No symptons of all the side effects of chemo or radiation. Very strong willed person I thank God everyday for another day. I'm truly blessed. Interested in talking to all Small Cell Lung Cancer people to see how you are doing and your stories and survival times. Have a blessed day.
My story is similar to yours. I,ve recently gone off maintain. Chemotherapy. Getting a second opinion (after surg to brain, gamma knife, radiation to lung, And 6 wks of first chemotherapy) at UCSF. It along with Stanford r rated tops in No. Calif.
Question: to anyone that knows - I hear a lot about cancer centers of America, but I think they don't accept Medicare & r primarily looking for private pay and/or top insurances. Can anyone shed lite?
My mother had Stage IV Lung Cancer, found 4 tumors on her bones and then traced in back to to her Lungs June 2004. Spread to her brain in February. They gave her three months, but she fought. She did 3 rounds of Chemo and 3 2-week week sessions of radiation. She died 13 months later. There are 4 of us kids and even though she had a hard time with the treatments, she fought every day for more time with us. She was 41. Keep fighting. You are all heroes in my eyes. God Bless.
Hello Lorisoto, sound just like me currently, how are you now? I hope all has been worked through for now. I understand.
Dear Peter Jr
Did you dad have to do maintenace chemo once his CT scan came back clear?
Hello all....I am a 39 year old mother of a 9 year old girl and a 14 year old boy. Smoke free for 10 years, healthy, eat right (almond butter, ezekial bread, chobani etc). Just did a half marathon in March.. I have been diagnosed with stage 4 small cell lung cancer and I cannot take the statistics...I am not a statistic...I am strong and I am going to fight this. I have been blessed to see my life through new eyes. I started my chemo yesterday and will start radiation to a small spot abutting on my brain. I have hope and faith. I am keeping a positive attitude and I am so glad I found this sounding board.
We are right here with you. We will be rooting for you all the way. Stay away from the internet stats and stick with the people who are LIVING it! Keep us posted on your progress please.
I am currently receiving radiation on my lung. My brain tumor is gone after 15 radiation treatments and my lung tumor shrunk from the size of a grapefruit to the size of, as the Dr. put it, a cocktail weenie. I am so blessed and keeping strong!! I walked 4 miles yesterday even though I am still receiving radiation on my lung. I hope to get back to my healthy diet soon. Everyone tells me I look good. I'll take it.
Hey I have a little girl, 2 and a son, 7. I was diagnosed in Nov. 2009 with stage 4 NSCLC. I immediately did a clinical trial with carboplatin, pemetrexed and avastin. After 12 weeks of that I went to pemetrexed and avastin. IN July of 2010 I started having a bad reaction to the pemetrexed. I have been on Avastin since then, every 21 days. After the first 12 weeks of chemo the tumor was almost non existent and all the lymph nodes were back to normal size. I just had CT results today and infusion. The Dr's said they have no idea how I haven't had a reoccurance AT ALL. I am going on 18 months and most typically occur at 3 months they said. They have now said they are thinking outside the box and would like me to consider letting them go in microscopically and remove the very tiny bit of tumor left in my lung to further test it and basically get it out of my body. I am leaning towards yes, why not try right? In the mean time I have divorced an abusive husband, moved into an apt with my kids and am loving and living every minute. I feel great and I am anxious to see results of PET scan next friday and brain MRI. Keep fighting, you have 2 reasons to give it your all. I really believe that attitude and being surrounded by loved ones helps.
This is great news!, I hope your pet and mri come out well, and you have continued success. Lori
God Bless you...Keep that positive train going and keep us posted please!
You are an inspiration to alot of us. Give those beautiful kids a big hug :)
I'm so happy for you! So far for me my tumor has shrunk from about the size of a grapefruit to the size of a, as the dr. put it, cocktail weenie. I am being radiated on the lung now. I am thinking of looking into clinical trials to keep the cancer from coming back. I hope all is well with you.
I find your post very encouraging and inspiring. My mom was diagnosed a month ago with stage 4 NSCLC. She went to the hospital with pneumonia and discovered that she has cancer. It has been very difficult for her and all of us. She is 63 and was never a smoker. I want to share with you and everyone else here that she was given carboplatin and pemetrexed. She also received radidation to reduce the tumor in her lung since it was in her air passage and she was having a difficult time breathing. The radiation and chemo appears to shrink the tumor in her lung because she can breathe better now and on her own. There were several nodules (lumps) on her body (head, chest, waist) and one of them (1/2cm) has disappeared. We are trying to be hopeful. She does not have any mutations so the doctor is not recommending any target therapy at the moment. I brought up Avastin to the doctor but he said it was not recommended since 1 in 100 will die from internal bleeding. Especially since my mom has coughed a little blood, he doesn't want to give her avastin. She will be going in for her second dose of chemo tomorrow and a new CT and MRI of the brain in two weeks. I am hoping that it will show us some positive signs. We have noticed some of the nodules on her body is getting smaller but we can quantify the results when we get the CT.
It has been a year since your post, how are you doing? Has the cancer went into complete remission? Did you change your diet at all during chemo? Did you do anything different? I hope you are well and look forward to hearing from you.
I was diagnosed last March 2011 with a stage 4 metastatic lung cancer. I went through a toracentesis to take 1200ml of fluid from my lungs. After evaluation of the pleural fluid, the my oncologist diagnosed me. That was 3 months ago. I started Tarceva, 150 mg, and had my ctscan last june 15 and the result was amazing. Please do not loose hope. There is a miracle out there. Just pray, eat healthy foods, rest and be happy. My doctor said I had a remarkable change and response to the pill. Take care, you will be fine.
Feb 12, 2012 will be my ten year anniversary surviving Small Cell Lung Cancer that spread to my stomach lymph nodes. Every time I would inhale I'd get a really sharp pain in my rib. I thought I cracked a rib screwing around on the floor with my son the night before. I went in to be checked because my wife (a Radiation/Oncology R.N. at the time) insisted. They told me I had muscle pain and tried to send me home. My wife insisted they give me an X-Ray. They found a mass in my right lung. I was given a CT Scan the very next day and a needle biopsy the day after that. The insensitive clods called me at work on my birthday Feb 12, 2002 to inform me over the phone that I had terminal small cell lung cancer. I was 37 with a 12 year old and a 15 year old boys at home. I was devastated.
The fear is the worse part. To make a long story short, after many chemo and radiation treatments they told me that my cancer was not responding anymore and to go home and spend time with my boys. From the beginning the fear sucker punched me. Then I started praying and the fear went away. I asked God to let me live long enough to see my sons graduate from High School so my wife wouldn't have to raise two teenage boys alone. Every single time I was asked I'd say God is going to let me live. Well he did. I have never been in remission or told NED. Every single CT Scan shows masses in my right lung and stomach nodes. They just stopped growing. They just sit there and don't spread anymore. I watched my youngest graduate from High School a long time ago. I also attended the Graduation Ceremony for my oldest graduating from Purdue University with his B.A. I haven't had a cancer treatment since Oct 2002.
Hope this give someone hope. When I was first diagnosed I had to stop reading the net about Small Cell and its horrible outcomes. I was told last month I am a two percent survivor. You can be too. You can reach me here or my email firstname.lastname@example.org if you need me. Mark
Hi Mark. I was diagnosed stage 4 small cell lung cancer (mastitis to brain) in May. I have had a lot of prayers and said a lot of prayers. I believe this and a positive attitude helps. My brain tumor was gone after 15 radiation treatments and my lung tumor has shrunk from the size of a grapefruit to the size of a cocktail weenie (dr.'s words, lol). I am currently having radiation on my lung and will be re-scanned next month. Doc told me he would then determine if I needed 2 more treatments or 5 and I told him I wouldn't need any, because the tumor will be gone....and I truly believe it!
Thank You for sharing your story, it gives everyone hope.....and I hope it turns them to God too.
Thats what we all want to hear. Me same as you 2 except only been on a 6 month journey so far. Am putting all efforts into research on what people like you had for treatments, and
well the idea is to run with what worked long term for others. Seems like what to do.
Faith in God to lead me and all of us in the right direction best of all.
My sclc isn't going to get me without a fight. I still got things to do.
I"m new on here. Not sure how all this works, so I thought I would just reply to your post. My husband is 37 and was just diagnosed in October with Stage 4 NSCLC. Barely any symptoms. And when we found it, it had already spread into his liver. No brain or bone mets though. He's about to have his 4th chemo treatment. Carbo, Alimta, and Avastin. His is inoperable at this time, but maybe that will change in the future. We were pretty much devastated with the news. We have 2 children ages 15 and 7. I know the survival rate is awful, but does it take in effect the nonsmokers out there? The ones who were so healthy, they didn't even have a doctor? My husband is a general surgeon in Arkansas. So he knows all the statistics. This makes him really negative about everything. I'm glad I found your post because I need to read that people do survive this awful disease.
How is your husband doing? How is his progress? My mom was diagnosed with Stage 4 NSCLC last month. She is going to have a second dose of Carbo and Alimta (pemtrexed) tomorrow. I asked about the Avastin previously but the oncologist didnot recommended since it can cause internal bleeding and my mom has previously cough up some amount of blood. Has your husband seen any reduction in the tumor? My mom has noticed reduction on a few of her nodules (lumps). I hope all is well with your husband.
my mum has lung cancer stage 4 and it is already spreading to her Liver and pancreas.
I took them to China to have a treatment.
I am so lost when the Doctor said there is no more hope :((
I do not want to lose hope.
I would like her to have a chemo but my dad worry that my mum can't take it and she will be in pain.
what should I do? She is kinda weak...
I am trying to starting the cancer diet right away...
Hi keepthehope, My mom got lung cancer stage 4 as well. We are in Shanghai.
Which city are you staying?
Maybe we can help with each other. I need hope too...
My mom is also weak, but believe me, you need to encourage her just like your ID: keep the hope!
We have not told my mom the truth yet. I am planing to tell her and I have faith in her! COME ON! If one person can make it which means it is reachable! Keep the hope, okay?
Leave msgs if you feel want to share. I will keep you posted about me and my mom. You are not alone!!!
Lung Cancer survivor 6 years gets carcinomatous meningitis
by raven97 on Sat Dec 24, 2011 09:30
Hi, My sister six years ago at 37 was diagnosed with stage four lung cancer. She survived by taking Tarceva/Avastin. But she had to battle 3 brain tumors with cyber knife after having seizures. A month ago she had blinding headaches, confusion and double vision which messed up her sight permanently. At the ER she was tested with spinal tap the only way to see cancer in the fluid and lining of the brain and spinal cord. The doctor said as lung cancer survivors live longer this is a progression of lung cancer. (so make sure you ask your doctor for a spinal tap if you are a long term survivor) They had to put a port in her head but she was on Avastin a long time and hemorrhaged and it paralyzed her on the left side. They have given her weeks as this cancer moves fast and attacks the nervous system. I will post a link for more on it. She is 42 now. I just wanted to address this and warn as long term lung survivors will get this more and more. http://www.ehow.com/about_5167093_carcinomatous-meningitis-t
Thank you for sharing, and I'm so sorry your sister is not doing well. I have you and your sister in my thoughts and prayers. Lori
Stardust, I celebrated 5 years this past March. I contribute it to incredible doctors and they say it is my determined attitude. It might be both but after the shock and anger wore off, I decided to do my best to stay positive while waiting for science to step up. I had it in both lungs and then it spread to my neck and adrenal gland. NOTHING is showing right now and I go for scans every 3 months. So Always have faith, hope and most important, BELIEVE in your own strength to WIN.
I'm so happy that I found this discussion board because it's exactly what I needed to read to feel hopeful again.
Back in February of this year, my mother, who is 66, was diagnosed with breast cancer, but was a different type than the breast cancer she beat nearly 30 years ago. In any case, she had a mastectomy and her lymph nodes were supposedly clear of any cancer. Fast forward to this September in which she was to undergo a hysterectomy for suspicious spots on her ovaries. When she went in for pre-op tests, she also needed to have a chest xray done. At first they were just going to use the x-ray she just had not even four months prior, but the hospital had not sent them over in time, so a new set of x-rays were done. If it wasn't for that, we would have never learned that my mother had 8 tumors on her lungs. I feel like that was a miracle in itself, and makes think there is a reason why that had all happened in the first place.
Today we received results from her brain MRI and they found a tumor in her brain. She also has a lump under her arm, and her pelvis, and has been complaining of bad back pain.
My mind instantly went to the worst place possible, and doing goggle searches of life expectancy was a terrible idea on my part, but that was until I found this forum. Reading all of your stories and positivity brings my hope alive again. I have to remind myself that everyone's situation is different, and cancer is not always a life sentence. We all don't live forever, but you always hope that somehow that won't apply to our loved ones. My dream is to have my mother watch me walk down the aisle, but regardless of any outcome, I know she'll forever be with me.
Everything did happen for a reason. Sorry you had to find your way over to this site. Do they think the lung and brain are breast mets or will they be doing another biopsy? Have they tested her for HER-2? It is my understanding that there are lung mutations that are related
Please take care of yourself. Would you give us an update? Maybe by starting a new thread to make it easier to find.
if we create a cocktail of pd 1 pd 53 and mdx 1106 can we all share the results looking to start my own trial at moffit in tampa august 2012