dianew Posted December 9, 2011 Share Posted December 9, 2011 As a patient with NSCLC, this sounds like a great assignment! This is certainly one disease that desperately needs more awareness. There are lots of survivor stories. You might look Under Lung Cancer Support Community, on the left-hand side of the screen, and check out Survivor Stories. There are also some short videos on you tube, as well as the My Story heading on this message board. I'm sure many others will be along shortly with perhaps more specific info on where to look for information. I'm really glad you are going to be doing this. Diane Quote Link to comment Share on other sites More sharing options...
connor_dillon Posted December 9, 2011 Share Posted December 9, 2011 Hi Diane, Thank you for responding so quickly to my post. I was wondering if maybe you would mind telling me a little bit about your self and or how your life changed when you were diagnosed? Quote Link to comment Share on other sites More sharing options...
dianew Posted December 9, 2011 Share Posted December 9, 2011 I will try to copy and paste a "survivor" article that Katie Brown put together from a questionnaire I filled out. Hope this is of some help. Survivorship March 14th, 2011 Survivorship means to me – living as well as you can, and enjoying life to the fullest, for as long as you are able. I was first diagnosed in March, 1998 and again with a new lung cancer in November, 2008. In 1998, I was diagnosed at stage 2A. I had surgery (left lung removed), and no chemo or radiation. I inquired about chemo or radiation, but was told by the doctors that it would not be a good idea. In 2008, I was diagnosed at stage 3B. I had concurrent chemo/radiation. I started with Cisplatin/Etoposide, but could not tolerate it. Chemo was changed to Carbo/Taxol. After surgery in 1998, I did very well with one lung. It took about a year to really adjust, but with only a few exceptions I could do what I had been able to do before. In 2008, I had severe side effects with the Cisplatin. I did much better with the Carboplatin. My red blood cell counts got very low. I had a loss of appetite, but still managed to gain 15 pounds by eating lots of peanut butter, which seemed to be the one thing that agreed with me. Lost my hair, had severe fatigue, but got through it. I was lucky. My husband was self-employed and so was able to take some time off. My daughter-in-law also was a great help. I don’t know how I would have managed without them. There is no support group in my area, nor really any useful resources. The best resources I have found are LUNGevity and GRACE. I would really like to have a lung cancer support group locally. After I returned to work following surgery in 1998, one person told me that she had no sympathy because it was my own fault. Most people were polite enough not to come right out and say that, but you could tell that is what they were thinking. I have learned to basically ignore it. If they seem receptive, I try to point out that there are people dealing with lung cancer who never smoked, and that in the case of those who did smoke, the tobacco companies have a great deal of responsibility in getting young people (I was 13 when I started smoking) hooked on nicotine. I’ve found that with people who are not receptive and have made up their mind, there’s just not much you can say. Lung cancer truly teaches you to live in the moment, enjoy today, and not worry so much about tomorrow. It also reminds you to be grateful for what you have, as you see so many who have it much worse. For me, because I was a smoker, the worst thing has been seeing how my illness has affected my family. I can remember telling them that it was “my business if I wanted to smoke” – well that’s not true. It has affected everyone in the family, but obviously my husband the most. Although I am doing well right now, I know he worries about my becoming sick again. So the concern is always there. Also, my breathing problems have a definite effect on our lifestyle. He is active and in good health, so it really makes me feel bad that there are so many things we aren’t able to do. I want to tell people that lung cancer can happen to anyone, and there needs to be much better screening methods, as well as more effective treatments. I want to make sure they understand that no one deserves lung cancer, and that it could be your sister, brother, husband or child. I want them to understand that many people who did smoke were addicted to the nicotine by the tobacco companies, and others only smoked for a short time years prior. You cannot blame anyone for their disease – it does no one any service. If smoking were the only cause of lung cancer, then all smokers would have the disease – actually the majority of smokers do not get lung cancer. I would point out the many environmental factors and the problem with Radon, which many people are not aware of. Although we are doing more for cancer research all the time, it is still not enough. There needs to be much more research done because the survival rates of lung cancer have not changed much in the past 40 years and more people will die from this disease if we don’t make sure there is enough funding for more research. Quote Link to comment Share on other sites More sharing options...
connor_dillon Posted December 11, 2011 Share Posted December 11, 2011 Wow, Diane what an incredible story. I am truly blown away. I have one last quick question. Towards the last part of the passage you mentioned something about breathing problems? Were these due to the cancer, or were they before diagnosis? Quote Link to comment Share on other sites More sharing options...
dianew Posted December 11, 2011 Share Posted December 11, 2011 Lungs are amazing organs. When they remove one, the other lung expands to fill in - of course there is still loss, but there are many patients who have lost lungs or part of lungs and still run, bike, etc. The radiation treatment did the most damage, but it was necessary. Quote Link to comment Share on other sites More sharing options...
RandyW Posted December 11, 2011 Share Posted December 11, 2011 If you go to the introduce yourself forum you might get a variety of responses from others also Connor! Quote Link to comment Share on other sites More sharing options...
ljdub Posted January 11, 2012 Share Posted January 11, 2012 I've taken a very long break since I last visited this site....various reasons, but a post on fb today reminded me I needed to check in and share my story since so many were seeming to need to hear stories of hope. So....here I am, still here nearly 8 years after diagnosis, and though I am living with COPD and having to adjust my lifestyle to that reality, it's still a blessing that I'm still here to be able to bounce my new grandson on my knee BigBrowne 1 Quote Link to comment Share on other sites More sharing options...
dianew Posted January 11, 2012 Share Posted January 11, 2012 8 years - that's wonderful. Thank you for sharing. Can't have too much good news. Diane Quote Link to comment Share on other sites More sharing options...
ksflwrpetals Posted March 4, 2013 Share Posted March 4, 2013 While most of the posts here are rather old...they still have the power to bring hope to us still fighting early on...thanks. LaurenH 1 Quote Link to comment Share on other sites More sharing options...
RandyW Posted March 4, 2013 Share Posted March 4, 2013 this is why we don't elete them.. glad they are helping you.. Quote Link to comment Share on other sites More sharing options...
Muriel Posted October 4, 2013 Share Posted October 4, 2013 I'm still here, too! I was diagnosed in May 2003 with Stage 1b NSCLC. Surgery (Upper Right lobe) and chemo . Eighteen months later the cancer returned to my upper Left lobe. Stage 1b, surgery, and chemo again. I've been free of that cancer since the second surgery. However, there are many kinds of cancer. Now I'm fighting stage 4 uterine cancer. I feel lucky to have survived lung cancer for so long. Muriel Quote Link to comment Share on other sites More sharing options...
Donna G Posted October 4, 2013 Share Posted October 4, 2013 Sorry to hear that you now are fighting Uterine cancer. I was diagnosed 12/3/97, stage 3 and am still here, cancer free. I lost my husband to lung Cancer July 23. He fought it about a year. Hope we hear from some more survivors! Donna G Quote Link to comment Share on other sites More sharing options...
Muriel Posted October 6, 2013 Share Posted October 6, 2013 Good to hear from you Donna! I am sorry to hear about your husband. I don't check this site very often. I knew he was ill, but hadn't heard anything recently. Stay well! Muriel Quote Link to comment Share on other sites More sharing options...
eric byrne Posted October 15, 2013 Share Posted October 15, 2013 Hi Muriel, Welcome home,really sorry to read of your dx ,may the treatments you receive be effective in beating off this cancer too. Quote Link to comment Share on other sites More sharing options...
texasone Posted June 26, 2015 Share Posted June 26, 2015 Hello All, I haven't been here in sooo long, probably 2009. I forgot my user name and/or password at some point (typical ) and then became absorbed by the distractions of life... I am happy to report that, as far as I know, I am still cancer free, coming up on 7 years around July 1. I was dx with nsclc adenocarcinoma, stage 2 A, in June, 2008. Treatment was right lower lobectomy and adjuvant chemo. I know the early dx was likely a life-saving blessing along with prompt, aggressive treatment. I expected to keep on living so I started graduate school in May of 2009, and finished my masters in December, 2011. I started a new profession as an Educational Diagnostician in August, 2012. I am very happy that I made that change--still in a public school working in special education, but not as a teacher anymore. There have been more mostly positive life changes. Two years ago I ended a 13-year relationship that was never right for me in the first place and soon after that I decided to cease most contact with my 2 remaining immediate family members--mother and sister--due to their tendencies to become emotionally abusive without any warning. I had my quota of that growing up. Such behavior is unacceptable and I finally realized it was better for me to remove myself from their pathology. I have seen my mom a few times but I maintain a strong boundary on the relationship. I've had to deal with my own serious mental illness, ADHD, chronic pain management, serious allergic reactions to 3 antibiotics, 2 more surgeries (cervical spine and sinus), and frequent illnesses, some serious, but I'm still alive and kicking! Except for 2 years I took off while finishing my degree I've worked full-time since 12/2008. I'll be 62 in November and 3 years from retiring. I have moderate COPD but don't need O2. I just can't do vigorous cardio due to SOB (I have 55% lung capacity). When it gets hot the ozone where I live causes breathing problems, so I avoid outdoors when levels are high. My biggest problem is a serious lack of social support and social isolation. My son and grandkids live in Virginia, so there's no family near. Since ending the relationship I've not had much energy for "getting out there" to meet new people after work and taking care of the house and all. I live 30 minutes from the nearest city (which isn't all that attractive to me anyway) and there's nothing happening in my little town! I am not a conventional person and my life has been anything but ordinary, so I don't feel like I can relate to a lot of people where I live. I need to finish my home projects, sell the house which takes too much upkeep, and move someplace that fits my needs better! Thanks for letting me go on . I know I shouldn't complain. I am grateful to be alive and in fairly good health. I know it's up to me to continue to make the positive changes I need and be patient because the outcome is not in my hands. I believe there is a reason for everything that happens. Those beliefs are what helped me accept the lung cancer diagnosis and go on to live in spite of it without fear or dread of what was going to happen next. Peace of mind is the best thing. Quote Link to comment Share on other sites More sharing options...
kimsmith Posted November 7, 2015 Share Posted November 7, 2015 My grandmother survived in 2013 November. After surgery chemo and radiation her recovery is going well. Thank all for sharing. Quote Link to comment Share on other sites More sharing options...
chris47 Posted April 25, 2016 Share Posted April 25, 2016 I'm new here and do question what if anything I might be able to contribute. That been said I am going on 11 years out after Dx nsclc stage 4, still NED. TG. Best wishes for all. Quote Link to comment Share on other sites More sharing options...
MommaTothX7 Posted May 8, 2016 Share Posted May 8, 2016 We all need each other!!! God Bless us all. Quote Link to comment Share on other sites More sharing options...
moggy Posted July 25, 2016 Share Posted July 25, 2016 has nobody been around here for 10 years ?? Quote Link to comment Share on other sites More sharing options...
chris47 Posted July 25, 2016 Share Posted July 25, 2016 Yes I have been around 11 years this Nov. I don't come here all that often. Quote Link to comment Share on other sites More sharing options...
moggy Posted July 25, 2016 Share Posted July 25, 2016 Texa where are you now? Quote Link to comment Share on other sites More sharing options...
Donna G Posted July 25, 2016 Share Posted July 25, 2016 As Katie said I am over 10 years , actually am over 18 years. I was diagnosed Stage 3B in December 1997. Wish we could have a big OVER 10 YEAR SURVIVAL PARTY ! Donna G LaurenH 1 Quote Link to comment Share on other sites More sharing options...
Jacqueline Murphy Posted December 1, 2016 Share Posted December 1, 2016 On 2/22/2006 at 9:53 AM, Connie B said: Okay my friends, this is a CALL for ALL LUNG CANCER SURVIVORS to PLEASE COME OUT COME OUT WHERE EVER YOU ARE!! I know we have more Lung Cancer Survivors on this board then just the few of us who post all the time. I think it would be so wonderful to see more lung cancer survivors here so we can offer strength and hope to all the NEW SURVIVORS that will sadly have to join us one day. How many of you sit here and gain strength from reading other lung cancer survivor posts? I know I do! I don't know what to say to bring more Lung Cancer Survivors to the surface, but I know we need each other and we need to share with others that there are a LOT MORE SURVIVORS in this world then just a hand full of us. Please click onto the Reply button and say hello and share a little about your journey with us. THANK YOU ALL. Warm and Gentle Hugs, Connie Quote Link to comment Share on other sites More sharing options...
Wheezer Posted September 10, 2017 Share Posted September 10, 2017 I'm here - so glad I found this group and site. I'm one of the fortunate survivors - upper left lobe - just three radiations over 12 days - but ... next time may not be so lucky. I thank God for every day and also wonder if next time - well if it will be worse. I don't take pills, don't get treatments - so yes, I'm one of the lucky ones. Tom Galli and LaurenH 2 Quote Link to comment Share on other sites More sharing options...
chris47 Posted September 11, 2017 Share Posted September 11, 2017 Still hanging around seldom have time to come here. Last year I no longer claim NED status. A 9.3 mm tumor come to light. Not at a stage to treat yet. Main challenge controlling the pain, and not giving into the fear and the negitivity. Still love to move and so often. Quote Link to comment Share on other sites More sharing options...
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