JoyceH

Thanks for the response. Two people now have told me that they got headaches from Iressa, though it's not on thier list of side effects. It's a pressure behind the eyes with me, too, more on the left side. And yes, I'm suffering from the "explosive diarrhea"! Maybe I'm not drinking enough water, that's a thought. I've been taking ibuprofen for the headaches, it does help a little. I have to take 4, though. I might try aspirin, though it gave my mom an ulcer. Thanks for the response- one of the many reasons why I love this board, someone usually answers me!

I've been having really bad headaches for about a week or two. I started on Iressa on June 10th. I had a ct done of my brain, and it was clear. Has anyone else had headaches while on Iressa? What else could be causing them? (also fatigue, but that could be from the radiation I'm getting right now).

Hi, everyone- Nice to know someone cares! I actually met with an oncologist recently at the University of Colorado cancer center, about an hour drive from here, but it was well worth it. She is an absolutely wonderful doctor! Very caring, and positive attitude, which I really need. (my last oncologist was not the nicest, or the most caring doctor in the world...). Anyway, she put me on Iressa. I'm starting on radiation for my hip, thighbone, and ribs (front and back) tomorrow for 10 days. I'm having a ct scan of my brain tomorrow, too, for a daily headache I've been having. Scared about this. So far, it feels like the fractures in my right ribcage have gotten better, and the Iressa (I've been on it for about 2 or 3 weeks now) has given me almost daily diarrhea, but not really any other side effects. I feel so much more optomistic since finding a new doctor. (thank you for the "push", Fay A!) My last doctor was such a creep. Well, that's it for me. I'm okay! Joyce

How do I go about finding a psychiatrist or counselor who deals with cancer patients and their emotional problems? I've been severely depressed and feel kind of hopeless with this disease, and I feel I need help. Where should I look first? Thanks.

I LOVE to hear news like that! Every time someone passes away on this board, I get really depressed. Do you know what he used to beat stage IV?

The pain was the worse I have ever experienced. Worse than labor. I couldn't even move. It hurt to cough, hurt to breathe. Radiation helped tremendously. My bone mets were in my spine, and my ribs. It actually caused a fracture in my rib.

I'm devouring this book by Patrick Quillin. it makes perfect sense to me, but I'm wondering if it's just too good to be true. I'm following his advice, a ton more veggies, no sugar, etc. I'm just really confused on what kind of supplements I should be taking. Everything on the internet confuses me - one site says "do this, don't do this", another one says the opposite - sheesh, it's mind-boggling! Not to mention, the doctors don't believe in nutrition at helping at all. At least not with the cancer. His survivor's stories are compelling in the book, though. Any opinions? Joyce

Hi again- I just wanted to say thank you for all the wonderful responses. I love all the different opinions from everyone. Very helpful! I will take everybody's advice. I'm looking into finding a new oncologist right now. You all are great!!!

I need some encouragement. My latest ct scan showed some growth in my tumor. My onc wants to put me on Taxol, but said the chances of it working is only 20% now. He's so discouraging. As I was digesting this news, the nurse is ordering a bone scan for me, and tells whoever she's talking with that I'm terminal... not something I wanted to hear, even if it is true. I cried all the way home from the doctor. He's not open to me trying Iressa it seems. I'm tired of his negative attitude. I think the only reason I still go there is that there's noone else around here that takes Medicaid, and I love the nurse who takes care of me during chemo. She's absolutely wonderful- very encouraging, positive, etc. I'm really bummed because I keep thinking I'm going to die from this. I have 3 kids, one is only 2. She won't even remember me. I'm just worried how my kids would handle this. I'm very close to my 14-year old daughter, this would devastate her. It makes me so sad to think about this. I know I'll be fine, I'll be in heaven! But still, to think about missing graduations, wedding, my daughters going through labor and having babies without their mom being there. I'm sorry if I'm depressing anyone. I'm just very upset about all this today. So frustrating having this disease. I never smoked. I don't deserve this! (not that anyone does...) Joyce

I asked my oncologist about Iressa. First he said he didn't think Medicaid would cover it, then he said it only works well with people with BAC. He is one of those very "pro-chemo" types. I don't think he's too interested in trying Iressa. I don't know why. He's never really been open to anything I've asked about, and it's frustrating!

I had the talc procedure for 2 pleural effusions I had last September, now I'm regretting it. There is a clinical trial for GVAX going on at the University of Colorado here, and I meet every single qualification (and there are many!) except for the fact that I need to have a rather large amount of fluid in my chest. I had that talc thing done, so i probably won't have a pleural effusion. is there a way to reverse this procedure? Does it work long-term? Does anyone know a website I can find out about this procedure? Thanks for your time!

Bummer. The link isn't working now. it showed a bunch of people with stage 3 and 4 lc, what chemo or :"whatever" they were on, and all of them were either stable, or in remission. It was very encouraging. I hope whoever put the page up sticks it up again... I did email her a few days ago, to ask how the folks on it are doing now, as it was a couple of years old- perhaps she's updating the page? I haven't heard back from her. Well, sorry everybody!

My husband is going to participate in this. If you live near Denver, or are going to be here then, please check it out! www.seeyouatthetop.org

I asked my onc about the possibility of going on Iressa. He said he didn't think Medicaid would pay for the cost, and it is very expensive. I also had told him that it worked better for non-smokers, and women. He apparently hadn't heard that. He said he knew it worked for lung cancer patients with BAC. It seems like any time I ask about anything different than chemo, he doesn't approve/doesn't think it would help me. WHY??? If I stop responding to chemo (which I'm afraid is going to happen), what are my options - death? Joyce

I asked my onc about the possibility of going on Iressa. He said he didn't think Medicaid would pay for the cost, and it is very expensive. I also had told him that it worked better for non-smokers, and women. He apparently hadn't heard that. He said he knew it worked for lung cancer patients with BAC. It seems like any time I ask about anything different than chemo, he doesn't approve/doesn't think it would help me. WHY??? If I stop responding to chemo (which I'm afraid is going to happen), what are my options - death? Joyce

I was doing some research on lung cancer tonight, and came across some really depressing websites. Then I found this page, for us stage 3 and 4 survivors. it's here: www.cancerpage.com/special/surviving_lung_cancer.htm - if this has already been posted, then forgive me! Joyce

I LOVE IT! I'd be honored if you would include my picture.

I was diagnosed last August with stage IV NSCLC. (female, never-smoker, age 36). I have had my lung drained twice already, back in September, and then had the "talc" procedure. (pleuraldesis???- I can't spell it). About 2 months ago, my left lower area of my lung starting hurting every time I take a deep breath or sneeze. I told the ONC nurse about it while getting chemo. She listened and told me there was some fluid in there. When I saw the Oncologist, he basically asked me if I could "live with it". Well, now I've been "living with it" for 2 months, and am wondering if that's a bad idea. It's just a constant reminder to me that the tumor is still there, albeit it has shrunk quite a bit. (Praise GOD!!!) It's shrunk by 66% so far, and more recently. I'm wondering if I should give my pulmonologist a call... I remember reading that if there's fluid in your lung, then the cancer cells can spread a lot more quickly. Does anyone know anything about this? I'm confused and need an answer! Thanks, you all are the BEST. I'm so glad I found this message board. Joyce

I'd like to introduce myself... my name is Joyce, and I was diagnosed in August of 2003 with Stage IV NSCLC with mets to the bone (back and ribs). I am 36 years old, married 15 years, with 3 children, ages 14, 10, and 20 months. I'm a born-again Christian. I am a never-smoker, and never lived with a smoker. It's so hard to believe that I have this horrible disease. I feel so alone in this, and hope I can make some new friends who are going through this on here. My questions are: do non/never smokers do better than smokers with lung cancer? Is it possible to live longer than what my doctor originally said? (9 months is what he gave me to live). I've been on chemo since October, after being hospitalized for 6 weeks with the most horrible pain I have ever been through. (bone mets in my spine). I had radiation for this, and it took care of it. (no more pain, and no more medication!) I'm on Carboplatin and Gemzar. (and Zometa for the mets). So far, so good. My CT scan in November showed the primary tumor shrank by 66%! I had another CT scan last week, and it showed "continued improvement" and "shrinkage" of everything the onc nurse read to me. (my doc had to cancel my appt for today for an emergency, can't wait to hear what his report is!) I'm really encouraged by this news, especially since I've been so depressed lately, feeling like I don't have long to live. Anyway, I hope to hear from some fellow survivors out there! Joyce [/img]