sistersue2 Posted May 10, 2009 Share Posted May 10, 2009 I am glad to find this site, all the posts are very helpful. I am a non-smoking woman, age 55. I was diagnosed with Stage IV NSCLC adenocarcinoma on March 12, 2009. It started in my right lung and has spread to the lymph nodes in my chest, stomach and neck. The symptoms began with shortness of breath, but I thought I was just having problems with acid reflux. I couldn't sleep on my side or flat on my back any longer, only propped up on pillows. I saw my primary care doctor for the SOB, she had a chest xray done. After that I had a CT scan and 2 bronchoscopies (the lab messed up the results of the 1st one--not fun. My CT scan did show a hiatal hernia, so I had that going on at the same time, it may have distracted me somewhat from the symptoms of LC. I started a regimen of carboplatin/alimta plus avistin on March 20, I have just completed my third round. I just had a chest xray on April 28, there is a huge improvement on the way the lymph nodes look and the disease in the lower lobe. My breathing is better, I can sleep on my side now and do a nice walk without feeling SOB. I have never smoked or been around smokers much. This diagnosis was a complete shock. But I am thankful for my good health, it seems it is good to go into this healthy as possible. I am trying to be hopeful. Some days are better than others. I am still working, everyone at my office is very helpful and tries to be aware of things that may cause problems for me. I have very good insurance and hope to keep that going by staying on the job as long as possible, previously I had not planned to retire until 65. A lot of you have mentioned keeping a good attitude and not being so fearful. I hope I get to that point soon but I am struggling. All the best to all of you. Quote Link to comment Share on other sites More sharing options...
Donna G Posted May 10, 2009 Share Posted May 10, 2009 Welcome Sue. So sorry you also got our diagnosis but glad you found us. It is sad the general public does not know that 1/2 the people diagnosed don't smoke, many quit years ago or never ever smoked! So glad to hear the chemo is working well. After radiation and chemo mine turned to just scar tissue. Keep us posted. Donna G Quote Link to comment Share on other sites More sharing options...
beatlemike Posted May 10, 2009 Share Posted May 10, 2009 Hi Sue and welcome. Im glad your treatment seems to be working. I have found this site very helpful,informative and supportive. I hope you do also. Quote Link to comment Share on other sites More sharing options...
Janet B Posted May 10, 2009 Share Posted May 10, 2009 Hi Sue - I am so glad you found this site. I am another neversmoker who was totally caught by surprise by this diagnosis - but there is hope - here I am 29 months later - and there is no evidence of disease. I am so glad treatment is working for you - and I will pray that it continues to do so - peace - Janet Quote Link to comment Share on other sites More sharing options...
fillise Posted May 10, 2009 Share Posted May 10, 2009 Sue, Welcome! I'm sorry you had to find us, but so glad that you did. It sounds like you are responding well to treatment, which is excellent. Trust me, many of us who are positive and upbeat now, weren't when we (or our loved one) was first diagnosed. My mom was diagnosed in Jan of 2007 with Stage IV NSCLC--it had spread to her spine. She wasn't a smoker either so it came out of the blue and we were all shocked. But she responded well to treatment and we learned that hope is very much alive. Today, 27 months later, she is strong and not on any treatment. You will find that there are many long time survivors here and I encourage you to read their stories and ask any question you need to ask. Susan Quote Link to comment Share on other sites More sharing options...
recce101 Posted May 11, 2009 Share Posted May 11, 2009 Hi, Sue, welcome to the LCSC! Lung cancer came as a shock to many of us, especially those who had never smoked and, to a lesser degree, those like myself who had quit 30 or 40 or more years before being diagnosed. With so much emphasis on the smoking connection these days, non- and never-smokers can be lulled into a false sense of security, and the symptoms are often so subtle that the cancer may be well advanced before we realize anything is wrong. You're responding very well to treatment, and it sounds as if the side effects have not been too debilitating. Have you had any particular difficulties other than the usual fatigue? Best wishes and Aloha, Ned Quote Link to comment Share on other sites More sharing options...
SandraL Posted May 11, 2009 Share Posted May 11, 2009 Hi Sue and a warm welcome to this group. You seem to be doing very well given the hand you have been dealt. So good to hear that you are responding to treatment, still working and feeling pretty good. We all have our up and down day, we're allowed. But for the most part you will find lots of hope and positive attitudes here. Good luck with the rest of your treatment and keep us posted on how you are doing. Sandra Quote Link to comment Share on other sites More sharing options...
ts Posted May 11, 2009 Share Posted May 11, 2009 Welcome Sue, Sorry you needed to find the site, but it is a true blessing. Lots of hope, good advice, and ears that have "been there, done that". Some days are better that others - you sound remarkable for 2 months on this road. You appear to have a "no wasting time" medical team and it sounds like it is doing right by you. Another out of the blue here. I just finished treatment, and I am still fearful at times, but trying to figure out how to live my life - I know it is one day at a time, but still need to plan for an uncertain future. Really, no different that if this was never my dx, just brings things more into focus. Be well, stay fierce, and accept help. Stephanie Quote Link to comment Share on other sites More sharing options...
dadstimeon Posted May 11, 2009 Share Posted May 11, 2009 Welcome Sue, Sorry you have to be here but glad you found us. I never smoked a day in my life either. I'm also Stage (been stable since Dec06) IV and this month marks seven years since my diagnoses. Right now lung cancer is the least of my problems and for the most part have had only a few problems with it all things considered. There's a lot to take in at the beginning and takes time getting used to the new normal. We all have our days and of course being scared is part of the territory. I'm so glad your treatments are working and you continue to work etc. Take it one step and one day at a time. I also believe a positive attitude does help when dealing with any type of adversity and no one can possibly be that way 24X7, we all have our down moments. Just be yourself and deal with things as they come down the pike-- it's Lung Cancer 101. Research as much as you can-- knowledge is the key. Stay with us and keep us posted. Don't go it alone, join a support group-- helps to be around people who have been there/done that, or get a phone buddy. Hope this helps. Prayers for the best. As long as there is life there is hope! Rich Quote Link to comment Share on other sites More sharing options...
jaminkw Posted May 11, 2009 Share Posted May 11, 2009 Sue, welcome aboard. Sounds like you are off to a good start with your treatment. My doctor said again when I showed some progression with this last scan that it is so important that I am healthy. They stressed that the first time. The chemos are kicking cancer right now but it helps to be strong to continue the regimes they set up for us. And the courage/positive attitude thing, like happiness, it's not a straight line. I always think it's best if I can make them the primary mode of living. But temporary downs are inevitable. Judy in Key West Quote Link to comment Share on other sites More sharing options...
Caren Posted May 11, 2009 Share Posted May 11, 2009 Welcome, Sue. I'm pleased that you are responding well to your treatments, that's always good to hear!!! Quote Link to comment Share on other sites More sharing options...
jstdzy Posted May 11, 2009 Share Posted May 11, 2009 Hi Sue, Welcome. Glad you found this site, it has been so helpful to me. Just remember to be gentle with yourself, as one of my friends had to tell me it's not like I stubbed my toe! Dana Quote Link to comment Share on other sites More sharing options...
ursol Posted May 11, 2009 Share Posted May 11, 2009 Hi Sue, I'm sorry you had to join our group but there are alot of people here that understand what you are going through. I am also stage IV NSCLC. Currently with no evidence of disease. I'm almost three years from diagnosis. I on the other hand did smoke up until the time I was diagnosed but I believe I would have gotten this even if I never did. I think the food we eat and the air we breath causes cancer as much as the smoking might. Anyhow...you are right, starting off healthy probably makes dealing with the chemo easier. I like you work and kept working all through treatment. It wasn't always easy but for me well worth it. Lilly Quote Link to comment Share on other sites More sharing options...
sistersue2 Posted May 12, 2009 Author Share Posted May 12, 2009 Sorry I don't know how to respond to questions other than starting another topic. One of you had asked about the reactions to chemo, I really haven't had anything horrible. On the night of the first infusion, I was very wakeful all night, and had nightmares. I bit the inside of my mouth during the night too. I mentioned this to my infusion nurse, who also happens to be my neighbor of 25 years. She told me for the 2nd round to take an Ativan before bed, one of the prescribed anti-nausea meds, even though I wasn't nauseous. She said the Aloxi and Dexamethazone that I was given via IV prior to the chemo caused the problem, and since the Ativan is also an anti-anxiety med, it would counteract the steroid. Anyway, that worked like a charm so now I take one of those for the first two nights after infusion. I should mention that this neighbor is also a breast cancer survivor, she went through all this herself five years ago. So she knows the drill from both sides. Apart from that one bad episode, I have had some queasiness each morning on days 4 and 5, so I take a Compazine to head off the nausea which causes me to go back to bed and conk out. I'm usually always late for work on days 4 and 5, but like I mentioned my boss is great about everything. Then it seems like by day 6, I am back to normal again. Or should I say, my new normal. I go for a walk everyday, about 1/2 hour. I'm pretty slow but my breathing is improving so I think I can speed it up a little as time goes on. I drink all the water I can, plus grape juice and lots of milk. I eat a little protein between meals so I don't feel queasy. I avoid sugar and added fats, plus red meat. But for the most part, I haven't changed my diet at all, I have always been a vegetable/fruit eater anyway. Thanks for reading this and adding any advice you might have. Quote Link to comment Share on other sites More sharing options...
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