new here with questions

[JoyceH]

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]

[DeanCarl]

Joyce,

I'm sorry you had to seek us out ... but VERY glad you found us. This is a special place with special people.

First and formost ... you are NOT alone. Not here anyway. One of the most important lessons I've learned in my life is that WE can do what *I* can't.

I can't answer the question about smokers/non-smokers, but I CAN answer the "is it possible to live longer" one. The answer is an unqualified YES! There are MANY people right here on this board who have FAR outlived the original predictions given them. And with those results from your last scan it sounds like you just might be well on your way to being part of that group also.

Try not to dwell on doctor's predictions. They aren't in charge of the when and where of our passing. It sounds to me like this battle you are having with this disease is FAR from over.

Dean

[Guest DaveG]

Joyce:

Well you wanted to connect with someone else who is a Stage IV. I didn't start out as a Stage IV, but as a Stage I. I have had two surgeries for lung cancer, both on my right lung. I was restaged to Stage IV last April, when they discovered I had mets to my lymphatic system. I went through 6 cycles of Carboplatin/Taxol, over a 19 week period, getting chemo every 3rd week. I had one cycle that I had to wait an extra week because of low blood counts.

Over all I am a 2-1/2 year survivor. I have also had to deal with liver mets, discovered in November 2003. I have been in 3 clinical trials and beleive that each trial, although they were in conjunction with standard treatments, aided in my recovery.

Attitude is the key to survivorship along with family support. My last scan, February 6, 2004 showed that my mets had either shrunk or had stabilized, and, at this time, I have no active cancer.

Being a Stage IV is not an automatic "get your affairs in order" because we have more than just several Stage IV's who are members of this group. One of our Stage IV's was given 3 months in January 2003. She is still alive, kicking, and traveling throughout the west with her husband.

Personally, my oncologist has never talked prognosis with me. Her attitude is: she will continue to treat me as long as I want to be treated, and as long as there is a form of treatment available. Right now, of course, I am not going through any treatment because of no active cancer at this time. I am on a 6 week follow up, with scans, and oncology. This will remain in place, as long as is necessary.

Remember this, your time will come when God wants it to end, not when a doctor says it will end, or anyone else for that matter. Faith and trust are two important parts of your survival. Always remember you are not alone. I will send you my telephone number in a private message to you.

[Don Wood]

Hi, Joyce! Welcome to the board. My wife, Lucie, was also told "9 months", with Stage IV NSCLC and bone mets. She has survived 16 months up to now and is doing well at this point. She also had radiation to take severe pain away from the bone mets, as well as chemo for the whole thing. Her treatment ended last May and she is on Zometa as well. It seems to be working for her. Live this day to the fullest and prepare to be here tomorrow! Keep us posted. Don

[karenl]

Hi Joyce

Welcome! So sorry to hear about your diagnosis. You will find several other young people here with lung cancer, so I hope that will help you to feel less isolated. This is a great group, and as the previous posts have said, loads of people are living longer than their doctors 'gave them'. The way I look at it, we can't alter the diagnosis, but we can certainly influence the prognosis!!

Congratulations on the shrinkage!

Karen

[dadstimeon]

Hi Joyce,

Sorry to hear about your diagnoses. For me it’s Stage IV with mets to the adrenal glands and in my bloodstream and I have had great (see signature) success to date. Just a minor set back last week. I never smoked myself so cannot answer one way or the other as far as smokers/non smokers. No one knows for sure how long one has. Those are just stats that’s all. I believe Ry’s husband was told 4 months and it’s been almost 2 years. They have come a long way in terms of treatments etc. Lots of options out there. Take one step and one day at a time. Stay positive and focused. Be pro active. Research everything you can. I would also suggest a support group for lung caner or a phone buddy. Someone who has been there and done that. Stay with us. Do hope this helps. Peace take care and God Bless.

Rich

[The Power Of People Helping People / The Power Of Knowledge / The Power Of God / The Power Of Believing / The Power Of Positive Thinking / The Power Of Never Taking No For An Answer / The Power Of Laughter / United We Stand, Divided We Fall / That’s The Key]

https://cissecure.nci.nih.gov/ncipubs (NCI Publications Locator)

http://www.plwc.org/plwc/MainConstructo ... 151,00.asp (PLWC Feature: Talking to Someone With Cancer)

http://www.zanesvilletimesrecorder.com/ ... 87526.html (3-year-old keeps her smile in battle with rare cancer)

http://www.rfalung.com (Radio Frequency Ablation Of Lung Cancer)

http://www.lungcancercoalition.org (Global Lung Cancer Coalition)

http://www.plwc.org/plwc/MainConstructo ... 008,00.asp (PLWC Feature: Financial Support Resources)

http://www.usnews.com/usnews/nycu/healt ... hqcanc.htm (Best Hospitals)

https://www.alcase.org/advocacy/sign_the_petition.html (Advocacy /Sign the Petition)

http://www.cancersymptoms.org (Oncology Nursing Society)

http://www.plwc.org/plwc/MainConstructo ... 008,00.asp (Questions to Ask the Doctor)

http://www.alcase.org/education/publica ... reath.html (With Every Breath A Lung Cancer Guidebook / From ALCASE / A Wealth Of Information / Free)

http://www.cancersurvivaltoolbox.org (The Cancer Survival Toolbox / Free / From NCCS)

http://www.centerwatch.com (Clinical Trails Listing Service / Center Watch)

http://news.google.com/news?hl=en&editi ... ung+cancer (Lung Cancer In The News)

http://www.thewellnesscommunity.org/pro ... /guide.asp (The Wellness Community / National Cancer Support, Education And Support / Free)

http://www.drugs.com (Drug Information Online)

http://www.alcase.org (ALCASE / Alliance For Lung Cancer Advocacy, Support, Education)

http://www.nlm.nih.gov (Unites States / National Library Of Medicine)

http://www.nlm.nih.gov/medlineplus/encyclopedia.html (Health Information / Medical Encyclopedia)

http://www.google.com (Great Search Engine)

http://blochcancer.org (R.A. Bloch Cancer Foundation, Inc. / Please read: A Letter to all newly diagnosed cancer patients)

http://www.cancer.org (American Cancer Society)

http://www.cancer.gov (Cancer Information Service / NCI)

http://www.cancerresearchcenter.org (Cancer Research Center)

http://www.aicr.org (American Institute for Cancer Research; Nutrition Hotline / AICR)

http://www.cancerhopenetwork.org (Cancer Hope Network)

http://www.acor.org (Association of Cancer Online Resources / Free Online Lifeline For Everyone Affected By Cancer & Related Disorders)

http://www.meds.com/lung/lunginfo.html (Lung Cancer Information Library)

http://www.lungusa.org (American Lung Association)

http://www.ama-assn.org (American Medical Association)

http://www.docguide.com/news/content.ns ... g%20Cancer (Doctor’s Guide / Lung Cancer)

http://www.healthfinder.gov/Scripts/Sea ... ?topic=506 (Healthfinder)

http://www.medicinenet.com/Lung_Cancer/article.htm (Medicine Net)

http://www.cancerindex.org/clinks2l.htm (Cancer Index / Lung Cancer Resources Directory)

http://www.nfcr.org/site/PageServer?pag ... ncers_lung (National Foundation For Cancer Research)

http://www.patientadvocate.org (Patient Advocate Foundation)

http://www.lungcanceronline.org/effects ... fects.html (Lung Cancer Online / Hematologic (Blood) Effects)

http://www.cancerlinks.org/lung.html (Lung Cancer Links)

http://www.cancer-free.com (Cancer Free Connections)

http://www.healthinsite.gov.au/topics/C ... ung_cancer (Health Insite)

http://www.lungcancerclaims.com (Lung Cancer / Lung Cancer Information Page)

http://www.cancerlifecenter.com/engine. ... =dictionar (Cancer Life Center/ Cancer Dictionary)

http://www.canceryellowpages.com/Resour ... G%20CANCER (Cancer yellow Pages)

http://icare.org (ICARE / The International Cancer Alliance)

http://www.vh.org/index.html (Virtual Hospital)

http://www.lungcanceronline.org/support/financial.html (Lung Cancer Online / Financial, Legal & Insurance Issues)

http://cancernews.healthology.com/focus ... cancernews (Cancer News)

[Snowflake]

Welcome to the family, Joyce.

Not a doom-sayer, but get your affairs in order - you AND your spouse. Either one of you could be hit by a beer truck tomorrow....

That said, to hell with the statistics, to hell with being "given" time by a doctor...it's YOUR body, YOUR fight - don't take anyone's word for what you can and can't do. NEVER, EVER give up Hope. Someone HAS to be the "1" in 1 in a million - why not you?

Set your hat, adjust your shorts and put your shoulders into it, the battle is ON!

Keep your hands inside the car, the bar across your lap and no standing. "Enjoy" the ride....

Becky

aka Snowflake

[Ry]

Welcome Joyce,

I predict we will be here celebrating next Valentines Day together. There are lots of options, lots of people beating the odds. Hang in there and let us know how you're doing.

Rochelle

[BeckyCW]

Joyce,

I can't say it near as well as everyone else here has, but you have every reason to hope for the very best outcome. As another Becky here (Snowflake) has said, we ALL should have our affairs in order, as any one of us could be hit by the proverbial truck any day. But you sound like a strong person who knows how much she has to live for, every day.

I wish I could remember where to find it, but maybe my brother will chime in here -- Soon after he was diagnosed, a friend gave me an article to send him, written by Stephen Jaye Gould, about statistics for survival. SJG was diagnosed with a particularly aggressive form of cancer (mesothelioma) and given a short while to live. He proceeded to live over 20 years, I believe, and died of something else. We all know that "just thinking positively" or "living a good life" will not necessarily shield us from harm; God has His own schedule for our lives that we will not know until we are not able to directly communicate it back to the living - ha. Still, it was an encouraging article and maybe DavidC can post a link to it, or I'll find it again.

I'm glad you introduced yourself, and glad you've come here. I'll keep you and your family in my prayers.

BeckyCW

[paddy]

Welcome Joyce. So sorry you had to seek us out though. Things must be so overwhelming for you and your family right now. Come here often to ask questions, or for support, there are so many fine people here going through just what you are facing. Lots of love to you and your family, you will be in my prayers.

Paddy

[BeckyCW]

Joyce,

I found the article I mentioned above. You can find it at:

http://cancerguide.org/median_not_msg.html

Parts of the article are difficult for me to grasp, but the main point is not that hard to get, and is a very, very good one. This is a man of science speaking about statistics on survival -- not "just" talking about how it helps to have a good attitude (although he says that, too!). I hope it helps answer your question: "Is it possible to live longer than what my doctor originally said?" YES!

About your other question, I don't know if not being a smoker affects the outcome or not, once you have lung cancer or not, but I bet it can't hurt!!!

It sounds like you've had a rough time of it, but things are looking up. I hope you're feeling well and strong now.

BeckyCW

[David P]

Hi Joyce.

They didn't think I would be around long after they removed my left lung almost 27 years ago, but hey, I'm still riding my bike. Take care.

David P.

[betplace]

Joyce the others have all said it very well, so I will just limit myself to: Welcome we are pleased you can join us, and we hope you will be with us for a long, long time! This is a great place and you will find that you want to spend lots of time with these delightful people.

Blessings

Betty

[beckyg]

Joyce,

No one gave me a time line--I never wanted one. I told doctors that I knew the statistics were grim, but I wanted to go at this in search of a cure, not just a little more time. As you can see from my signature, I am in shoes much like yours--no smoking in my life, and this diagnosis came out of the blue. This subgroup of young nonsmoking women with andvanced lung cancer seems to be growing. I don't know if being a lifetime nonsmoker has much impact on how well people respond to treatment--I have yet to hear "shrinkage" from anybody, and I have been at this for a year, but I am still at this after a year, and I am still working every day. Congratulations on your good results, and stick with us--you won't find a better place to be to talk about lung cancer.

Becky

[Fay A.]

Welcome, Joyce.

We aren't statistics....we're people. And it sounds as if you are responding well to the chemo. Prognosis is an educated 'guess', but we are proving those guesses wrong every day.

[rick m]

hi,,,,, do yourself a favor and do not listen to stats or timelines. from the info on how your treatment is going it sounds like u are kicking *ss!!! you will be around MUCH longer than 9 months....

[Joe B]

Welcome Joyce,

I too am a never smoker. Its really odd to see so many of us here. I, in fact, am a fitness fanatic and have lifted weights and played all kinds of sports my whole life.....

Do NOT listen to statistics. There are numerous cases of complete remission from this condition, and there are many here that are living quality lifes for may many years. there is plenty of reasons to be hopeful.

I too inquired on the prognosis of never smokers with thi scondition, never found any studies or data on that. I did read from Patrick Quillan (wrote the book "beating cancer with nutrition") that he has had extremely good experience & results with with never smoking lung cancer patients that followed his nutritional/ suplement advice.

Welcome, although I wish you didnt have to be here..... Joe

[cathy]

Hi Joyce,

I am so glad that you found us. There are so many here that have outlived what some doctors had the nerve to tell them.. Shrinkage is really good news.. I cant to pretend to know how you feel because I am not walking in your shoes, however there are many here who are in the same situation, You will see that you are not alone...I know you will find comfort and much knowledge as much as I hate that we all have to be here its a good place to be, full of extraordinary and special people.. WELCOME

[karen335]

Hi Joyce,

I can't say it any better than the prior posts. I am happy to hear that you are responding to the chemo and the tumor is shrinking. Just keep a positive attitude and fight, fight fight... Statistics are just that, statistics. You will be in my prayers each day.

Blessings to you...

Karen

[MO_Sugar]

Welcome to the "Family" Joyce. Prayers and good thoughts are being sent your way.

God Bless,

MO

[Guest Michael]

It always pains me to see a very young person with small children dealing with this horrible disease. Please don't place all of your trust and confidence in prayers and conventional treatment. You absolutely must focus on nutritional therapies as well. Learn what you should be eating and what you must avoid. There are many foods and supporting nutritients (ex: green tea, wheat grass, barley juice extract, bee pollen, soy, mushroon extract, and many others) that fight cancer. There are foods that feed cancer which must be avoided. It's all about nutrition and a strong immune system. there are two people on this board who also believe in the importance of nutrition (Joe B & Hebbie). Joe B mentioned a book which I also strongly recommend (by Patrick Quillin). Also, visit the website of Dr. Lorraine Day who cured herself of cancer. There's also lots of other books and data which can easily be found on the internet. If you can, consult with a nutritionist who specializes in cancer patients. It's crucial that you obtain as much knowledge in this areas as you can absorb. Remember, cancer doctors believe that you only fight cancer with surgery, chemo, radiation and drugs and have no interest or knowledge outside this area. Look closely at macrobiotics as well. Again, please don't place all your trust and confidence in doctors and drugs. Look closely at Nature's Medicine Chest.

[Lisa O]

I, too, am sorry to see you here. I believe that most statistics are very outdated and are based upon groups of patients that are irrelevant to most of us. Please put any death sentence out of your mind.

I agree with Michael about being proactive with diet and nutrition during treatment and beyond... what that means to you personally will depend on your treatment, your oncologist and your belief systems. I do avoid processed foods (especially the "whites"), meat or poultry that isn't free range... I also try to use organic produce and dairy. I use a great deal of soy, green tea... Does it help??? I have to believe it does based on how I feel. Others disagree.

In terms of dealing with the Stage IV diagnosis - I plan for the worst and hope for the best. I write to my youngest daughter in a journal as she will probably not remember much of these early years. I try to keep photo albums up to date.... I guess these things are nice parenting ideas anyway. Am I giving up or planning a date to go??? NO WAY!!!! No one on this earth has anything to say about my destiny. That decision will remain in the hands of a higher power. I do, however, want to have as few regrets as possible if I see headlights crossing over in to my lane from oncoming traffic tomorrow night. Isn't that how we are supposed to live anyway?

Sorry if this is too much information too fast. I wish you all the best.

[-Cheryl-]

Joyce,

So glad you found this site, which is so full of hope and genuine survivors. Thank God I happened upon this site myself, back in May 2003. I can remember feeling so lost and in such deep despair. My friends and family all said to me,"Wow, if you, the health nut and exercise fanatic gets lung cancer, then there is no hope for any of us.!" But it just goes to show you, anyone can get lung cancer. None of us know when our time to leave this earth will be. I am not so sure I want to know, just brings me down. So, I try to live each and everyday to the fullest. Your children need you, so plan on being around awhile! Always here if you need to talk,

Cheryl