stephf1958

My last scans were taken (Brain MRI & Chest CT) 8/15/08 still NED (since 8/31/07) Dx 1/2007 - stage 4 w/brain mets Craniotomy, followed by 6x Taxol & Carboplatin, followed by 17x radiation to hilar nodes, and the cancer just disapeared... Miracles happen. I am thankfull every, single day!

Surivior in Oregon. Have been living life as if I've never been sick since last scans (in August) were NED. Feeling very thankful this weekend and decided to check this board.

I can see that the side effects run the gammet. Just got "mapped" yesterday, recieving my tatoos (which look like blackheads). Start treatments next Tuesday. Hope I do as well as some of you, but I gained 10 lbs with chemo, so I wouldn't mind loosing a few pounds

My radiation oncologist has proposed doing a 5x a week for 6 weeks radiation on 3 lymph nodes (hilar) in my chest. (The nodes are the only things that appear to be cancer in my body.) I am thrilled that he will do this, as he is stepping outside of the convetional treatment box for stage IV, and actually offering an agressive treatment option. I see that many of you have had radiation, and would like to hear from those who have had it to the chest what I can expect (he told me it will be difficult to swallow the last 2 weeks), and any tips to get through it.

You sound like a fighter! I am new to this board myself, and have found lots of encouragement. I too am doing the lung cancer thing solo - my marriage fell apart last summer, before I got sick. I had the job, so I kept the kids and the house too. I just wanted to comment on your job thing. I think you are covered under the Americans with Disabilities Act. When I asked about the security of my job, the nice people in my human resources department said that I am now protected by the ADA laws, so it may apply to you too. http://www.usdoj.gov/crt/ada/adahom1.htm Also, if you have been disabled for more than 5 months you should qualify for social security and medicare. Last thing you need to worry about is insurance! I hope I am right about you being protected. Steph

Now on to recovery and a well deserved rest.

Lilly, Buy the curtains! You are very strong to be able to work through this. I actually begged my doctor to return to work, on a part time basis, because I am totally bored and not meant to be a homemaker I will start working (telecommuting) May 1. Does your work offer disability pay, or your state? With advanced NSCLC you qualify for social security (and your kids will get $ too), but think you need to be totally disabled for a number of months. May be worth looking into. Once on SS, you get Medicare too. As for buying stuff, personally I believe in retail therapy (within reason). Also, my mariage of 20 yrs fell apart last summer (before I knew I was sick), and I refinanced our house to pay him off and get some extra $ to fix it up. I had made only a small amount of the planned improvements when I got sick. Now here I am, stuck home looking at all the things that are broken and decided now was as good a time as any to get the work done. I figure that if I have to be home, it might as well look good, and if the worst happens then my kids will have a nice home. I could save the home equity money for a "rainy day", but where's the fun in that?

I appreciate all the comments, and know that I have found a good place! The internet has finally provided some hope I did want to add a little bit of info. I did get a second opinion, at OHSU (Oregon Health Science University). The doctor who saw me told me 6 months, but I was the one who asked for the statistics. My oncologists (medical and radiation) have refused to give me a date, as they have told me it is all up to the individual patient. I went to a lung cancer presentation last week, and the OHSU doctor gave a presentation, listing the same awful numbers, but she said that no one has an expiration date on their foot! (To bad she didn't tell me that in February ) As for support, I just started looking for a group in town, and there isn't one for lung cancer. I just wanted to talk to folks with the same condition. My family (who across the country) and friends have been super suportive, but they don't really know what it is like. I plan to attend a group for cancer patients in general, and have just found a 6 week workshop "Living Well with Chronic Conditions" that I plan to go too. I think I will try to start a lung cancer group, but as yet haven't a clue how to do that. p.s the picture I added is of me one month after brain surgery and one week after my first chemo treatment!

First let me introduce myself. I am 48 years old, living in Portland, Oregon. I am a single mother of 2 teenagers. I starting having severe headaches in early January 2007. I also started loosing my ability to think and talk. I'd go to work and couldn't figure out how to do my job. At first I was prescribed medicine to treat the pain, but after it didn't work, my doctor ordered a brain scan. The MRI showed 2 tumors, one on top of the other, and massive swelling in my brain. The tumors were removed by an emergency craniotomy on the 20th. A biopsy of the tumors indicated metastatic adenocarcinoma (Stage IV non-small cell lung cancer). Before I had surgery, I had a head-to-toe CT scan to see if any other tumors could be located. A couple tiny (>3 mm) spots were found, one in each lung, and 2 lymph nodes were enlarged (8mm & 12.5mm), but nothing that was large enough or easy to biopsy. A later PET scan lit only for the 2 nodes, not the spots in my lungs. Does anyone know how they can say it's lung cancer when there isn't a tumor in my lungs? I have no symptoms of lung cancer either. I started chemotherapy on February 21. I get carboplatin and taxol every 3 weeks. I had a CT scan on April 2nd (after 2 treatments), that showed the lymphnodes had returned almost to normal size. Whole brain radiation was not started, as I lost some cognative skills after surgery (all have returned, thank goodness). Also the doctors wanted to start chemo right away. I will continue regular brain MRIs. The 1st one (1 month after surgery) was clean, the 2nd on showed 2 spots where one of the tumors was removed, but are too small to tell what they are, so I must wait another month. If the spots are tumors, then I'll get the gamma knife to the brain. So, I am now seeking out support. Initially, I couldn't read for more than 5 mins, so never did any research on this disease. That was probably a good thing, as I don't like what I'm finding out. I simply cannot believe that I have a terminal disease. At least the docs treating me, though they tell me I'll die from this eventually, say it won't be in the immediate future (because there is so little cancer? I don't know). I have heard that I have 6 months, but refuse to believe that (though I did set up a trust and update my will) There does not seem to be a single group dedicated to lung cancer in Portland. There is a ton of stuff for women with breast cancer, and some for other types, but nothing for lung. What's the deal? I actually had someone wrinkle thier nose when I told them I had lung cancer, like I was dirty or something. That kind of reaction is not fair.