Stage 4 Nsclc Is There Any Survivors Out There?

I just had my right upper lobe removed. One lymph node was involved and cancer has spread to right side of my wind pipe. I have a very very small amount of fluid at the top of my heart and doctors said not to worry that it was there in Jan and March and August with no change....(could it be malignant?) they said not. I am currently waiting for treatment...everyone seems so glum...I have started seeing a naturopath...is there anyone out there who has kicked this disease? I had a fellow call me last week...he said he had the same cancer I did...NSCLC....that he had 2/3 of his lung removed and 2 months later it came back to his windpipe and drs told him he would never speak again and he had 2 years to live....he got radiation...that was 16 years ago! Any other of you out there? we need to hear from you so we can fight this *&&^%$% disease! My surgery was 4 wks ago...I seem to feel winded but my blood oxygen is 99% am I feeling the effects of the surgery or will breathing get easier with time? Before surgery I was not this winded...I used a puffer before surgery on occasional hot smoggy days, but now its a bit of effort I use it more now...is it because I'm still healing?

Hi my mom is a 15 month Stage IV NSCLC survivor. She has mets to her liver and had malignant pleural effussions back when it was discovered, She was not a surgical candidate but has had Carboplatin/Taxol X 4 doses followed by 7 months of Tarceva and now is on Alimta. Right now she looks much better and is stronger then she was back at the beginning of this . She is living a normal life. Her last CT shows everything is stable.She has had very few side effects to any of the treatments outside of fatigue which with The current chemo only lasts a few days.She is 81 but very active and was a nonsmoker with no other health issues. If you have not done so get the book "Beating Cancer with Nutrition" by Patrick Quillin. I think doctors make a huge mistake overlooking nutrition like they do. I feel that yes medical treatment can knock the cancer down but then it is up to your body to cure it and giving it the proper nutrition can make a big difference. The doctors do not want you taking supplements while you are on chemo but since starting the Alimta my mom has been taking mangosteen juice which WE consider to be a food not a supplement ( from costco) and it may be what is helping her avoid side effects. I take it fot a chronic inflamantion in my foot that steroids and motrin the doctor gave me did not help at all and since staring mangosteen several months ago the pain is gone. I have several friends that are also taking it for different reasons and are seeing results and yes they have been doing studies on it with breast cancer and No I am not a dealer. I have traveled in South East Asia where mangosteen "the queen of fruits" grows and the locals believe it has a lot of medicinal benefits. Another important aspect is attitude, my mom believes she has years ahead of her and sort of lives in denial but hey that does beat sitting around thinking " I am going to die" and I think it is another reason she has done so well. Learn all you can from others that share this journey as believe me your doctor is not God nor does he have all the answers as we have learned. Don't be afraid to question the doctor as that saved my mom's life at this time last year.I do believe that Prayers can help too so will add you to my prayers. Best of luck to you as my mom would say if this cancer wants her it will have to put up one hell of a fight as she does not plan to just lay there and let cancer win. JanMarie

Thanks for your response Janmarie.
I am sorry to hear about your mom but at the same time she sounds like quite a spirit! I appreciate your advice and I have to tell you that yes, I have been seeing a naturopath and they have me on all kinds of stuff...I have changed my diet completely...no meats(maybe a small 1/4 pc of chicken...I eat only salmon caught off the coast of alaska (brother-in-law sends it to me) and fruits, nuts, and vegetables galore! And I can't forget to say that I try to drink at least 3 litres of water daily...I am also eating a diet high in Alkaline and staying away from acid foods (that is foods that once digested turn acid)...As mentioned above, I had a tumour removed Sept 14...they have staged me at 3b/4...I'm a 46 year old female who doesn't smoke...I am very healthy and at this time the doctors have said that they would suggest holding off on chemo and radiation until I present symptoms! Yes, the cancer has spread so we will just wait and watch the CT scans to see how fast its growing...tumours have been found in both lungs but are still .5cm or smaller..cancer at wind pipe is not visible by CT scan...though biopsy said its there. Sooooooo do I wait? I've never heard of waiting while cancer grows in you but they suggested that as long as I'm healthy and feeling good why play the chemo card until its absolutley necessary...I've decided to go to Princess Margaret Hospital in Toronto and get a 2nd opinion...take care and God Bless...I share your moms attitude...this cancer ain't gonna take me easily...I have 4 great kids and every reason to kick some big butt! Thankyou for saying a prayer for me...I will say one for your mom...the best gift to give anyone is the gift of prayer. Thankyou and God Bless!

Andrea:
Has anyone recommended Tarceva to you? You sound like an ideal candidate - female, non-smoker.

I was diagnosed with Stage 4, non-small cell cancer, with a mass in my right lung that had metastacized in my back. I went through 4 months of chemo and the tumor totally shrunk to nothing. I've been on Tarceva for 4 months with no real serious side-effects. I have lots of energy and feel like it has all been a bad dream!

My mom did tarceva for 7 months with a good responce until the liver mets started growing again. She had the rash but it was not that bad. The tarceva shrunk her lung tumor down to nothing where it has stayed so in our opinion if you are someone Tarceva works for it can kick some major tumor butt! They say female nonsmokers tend to respond to it the best so maybe you should ask about it if you have not already done so. Lets show these doctors that getting aggressive with treatment of stage IV makes a difference! God bless, JanMarie

I have been on Tarceva for 5 months when my doctor tells me that it is only effective in 20 - 30% of the patients. He wanted my permission to send a biopsy of my tumor to the manufacturer of the drug to see if I fell into that category. I am awaiting results. If I am not in the 20-30%, doctor said I could quit the Tarveca and just be checked every 3 months.

I too am a non-smoker, 57 year old female taking Tarceva for 10 months. I have stage IIIb nsclc and thought I was in pretty good health (only mild asthma) when I was diagnosed Sept 04. I had only minor side effects rash, diarrhea, nose sores, cracked fingertips and toes but a small price to pay. A 4cm tumor went to microscopic size in the first 10 weeks on it. I felt fantastic for about 6-7 months but a CT scan done in Aug and a 2nd in Sept showed I have 3 new tumors growing in the same area of the upper left lung. I spent 10 days in the hospital late Sept for pneumonia and pleurisy. I had pleural effusion but when it was drained it showed no cancer cells. I am continueing to take Tarceva and hoping & praying it will start shrinking the new tumors. But since Sept I have been so tired & I feel short of breath with any kind of activity. I recently started taking coQ10 to help fight this disease. Any other vitamins or foods that might help? I'm going to look for the mangosteen juice & try it. I have 9 grandkids and I want to stick around & see them grow up so I intend to keep on fighting as long as I have breath. I know God is ultimately in charge & I put my trust in Him daily. Please pray for me & I will do the same for you. Carol

I too am a non-smoker, 57 year old female taking Tarceva for 10 months. I have stage IIIb nsclc and thought I was in pretty good health (only mild asthma) when I was diagnosed Sept 04. I had only minor side effects rash, diarrhea, nose sores, cracked fingertips and toes but a small price to pay. A 4cm tumor went to microscopic size in the first 10 weeks on it. I felt fantastic for about 6-7 months but a CT scan done in Aug and a 2nd in Sept showed I have 3 new tumors growing in the same area of the upper left lung. I spent 10 days in the hospital late Sept for pneumonia and pleurisy. I had pleural effusion but when it was drained it showed no cancer cells. I am continueing to take Tarceva and hoping & praying it will start shrinking the new tumors. But since Sept I have been so tired & I feel short of breath with any kind of activity. I recently started taking coQ10 to help fight this disease. Any other vitamins or foods that might help? I'm going to look for the mangosteen juice & try it. I have 9 grandkids and I want to stick around & see them grow up so I intend to keep on fighting as long as I have breath. I know God is ultimately in charge & I put my trust in Him daily. Please pray for me & I will do the same for you. Carol

Hi,I've been on 100mg tarceva since Sept.28/06. I have multiple tumers on both lungs.I have a rare type of cancer. It's Besil Cell Carsinoma, normaly it's an external skin cancer. My Dr.and other Dr.are uncertin how this has accured?? I did 6 chemo treatments last year at MD Anderson. There was very little shrinkage. There is to many spots to do surgery or radiation. My largest spot is 5-6 milameters. I'm HOPEING this Tarceva will shrink my
"spots". I try not to use the "C" word as much as possible. I'm a firm beleiver in useing our minds as TOOLS....Not as another enemy. It is very hard at times I know. I try to be upfront with the ones I'm around about NO Negative storys Please!!!
I had a tumor found under my right arm pit in 1999.
It was diagnoised as Besil Cell Carsinoma, agin very rare. They did remove it along with 8 lymp nodes under my arm. At that time they seen "small" spots in my lung but was not real concerned thinking they could be scar tisue from over 18 years of smokeing. But in 2004 a spot showed up on my right sholder. It was Squimus(?)cell skin cancer,not Besil cell.
Dr. removed it. At that time we took a chest X-Ray and my Cancer Dr. said the spots have gottin bigger and are in both lungs. Well this Dec.06 will make a year since my last chemo.
My spots are a slowwww mover,thats great!!
Look forward to talking more,this is my first time on. Stay positive ALL : )