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deborahscott34

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Hi Deb,

I'm sorry you had a reason to find us, but this is the best place online for support. Take some time to browse our forums and read about the survivors we have here. They will give you hope and inspiration as you start your lung cancer journey.

It's a scary time, but you don't have to go thru it alone. And remember that there ARE stage IV survivors of lung cancer...we have them here.

If you have medical questions, Dr. Jack West volunteers his time to answer general questions for us. He can be found at www.onctalk.com

Keep posting, it really does help and I look forward to getting to know you. I am sure you will have many more replies before the day is through.

Welcome,

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thanks for all of the replies.Im glad i found this place.I updated my profile signature thingy,im hoping it works.I did it like yours,with the cancer treatment info in it.I thought that was nice.kinda did have to guess at a couple of dates though.Pretty sure i got it pretty close,guess you dont really forget that stuff huh,

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Welcome Deborah (Debbie?),

You have provided an excellent Profile which will help many of us as we travel this road with you.....on occasion offering perhaps our own experiences that may hopefully assist you in your own tx. You have certainly been through the drill that many of us have completed as well. There are many here with Stage IV dx plugging along for many years. Our job is to keep finding that next tx to keep us going.....kinda like a chronic disease ~ not necessariy a terminal one.

I was pleased to see you did get a second opinion......that is most important. You will see that I actually got 4 of them!!!! I hope you find as much support, information, friendship, and compassion as I have during my tenure here. Sorry you have the need to be here..............but hope it helps you.

Kasey

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I almost forgot,I have been keeping an online journal,hoping to help people to quit smoking.If anyone would like to read it,or learn more about me,then you can find it at whyquit.com,my story is under deborahs stage IV battle.

I have been using this to try to help as many people as i can to quit.I guess this is part of my way of dealing,and trying to give something that will always give.

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Hi Deb. Glad you found us and I hope we can give you lots of support. Some of our Stage IV people have remained stable for a long, long time. I hope you have the same good fortune. My first chemo was carbo and taxol and I had a lot of pains, too. My onc. gave me a Rx for vicoden and it helped a lot. I only needed it for a few days starting about 3 or 4 days after chemo. You might try Aleve or Advil liquid gels, too. They've helped lots of my aches and pains.

Muriel

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some financial assistance links for you to check out!! this seems to be a very top priority right now for you and I HAVE READ EVERY WORD on you whyquit blog!?!?!? You know what I mean though..

1) http://www.cancer.gov/cancertopics/fact ... assistance

2)http://www.patientadvocate.org/

This may help for Prescription finance aid!!

3) https://www.pparx.org/Intro.php

4) http://www.breastdoc.com/Consumer_Resou ... atien.html

Home Care??

5)http://www.cancer.gov/cancertopics/factsheet/Support/home-care

Now that we have all that out of the way, we hold a chat every tuesday nite at 8 pm eastern time. You can also get lots of questions answered there by members. I am Randy and I am in Greensboro, Alexan or Bucky is also in greensboro and Ellie or Sis online is in Mount Airy. Let us know your needs and concerns and ANY QUESTIONS ABOUT ANYTHING!!! THe above links are pretty good for startes and you amy find something in there too help out. we all know of the finiacial hardships of Lung cancer and some of us have been further in the journey than others but we all help each other whenever the cry is heard.

Sayin prayers, Get your Bread and Milk before Wednesday night and wrap up in a BIG WARM Blaket from the dryer. THe sun comes up tomorrow. Most impportant, DON"T LET THE CANCER RUN YOUR LIFE, RUN THE CANCER OUT OF YOUR LIFE!!!!!!!!!!!

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Hi, Deb:

Like Randy and some others, I also read your whyquit.com blog. What comes through to me the most is your genuine concern for others in spite of everything on your own plate, and the lack of any "why me" self-pity. You must be a very strong, well-balanced person.

But I also get the feeling that you're being too hard on yourself:

...It could have been totally avoided had I not smoked or continued to smoke.

Without downplaying the harmful effects of smoking on oneself or those nearby, let me just say that you don't know for sure, and you may never know for sure, that smoking is what caused your lung cancer. Genetics and environmental factors also play a role, sometimes the predominant role. That's especially true for adenocarcinoma, which has been called "non-smoker's lung cancer." I was diagnosed with adenocarcinoma (stage IIIB) 16 months ago, 43 years after I quit smoking. We have members who never smoked but got lung cancer (usually adenocarcinoma) in their late 20s and early 30s. Realistically, if you had quit smoking as a young adult, or never started at all, you would have improved your odds but could not have been guaranteed that you would never get lung cancer.

This OncTalk discussion has some good info:

http://onctalk.com/2006/11/21/do-never- ... t-disease/

I doubt if my saying this makes you feel any better right now, and I debated for a long time whether to write anything other than a general welcome to the group, but I did with the hope that you can stop beating up on yourself so much and direct some of that scarce energy to a better purpose.

My very best wishes and Aloha,

Ned

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I have had both a hard time and a wonderful time writing that journal.helps me work some things out as well.

I guess i sort of felt that I was such an idiot for smoking after my mother died of the same thing,and my father died as well,I also have emphesyma just like him though not so bad at this time.

I am going to make an effort at not punishing myself for this disease,and focusing more on life,and that im glad i have it.

I didnt realize i was a good writer,nice to know.John does help a little,Not a great speller or typer LMAO,i give him credit for cleaning up my messes so to speak,(as im sitting here giggling)

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Welcome-

I am glad you joined us. Avastin worked wonders for my husband and I wish the same for you. It is easily tolerated and shouldn't bother you. About the pain you're having with chemo-- the answer could be as simple as drinking lots of water-before, during and after. It will help with those body aches.

Welcome again-

Rochelle

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Welcome Deborah ... I read your site and also felt as Ned did - you sound very strong and courageous and ... very hard on yourself.

Glad to hear that you are going to go easier on yourself. Many of us had the coulda', shoulda', woulda's for awhile. I quit smoking about 18 years ago and went through huge guilt issues as well. I finally realized that it probably didn't help matters that I smoked, but I may have gotten lung cancer at some point regardless.

Anyhow, glad to "meet" you and look forward to hearing more from you.

Linda

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Welcome Deborah-- Sorry your have to be here but glad you found us. Lots of hope, sharing, caring and support here. I was told not operable, not curable and not (prognoses 24 months) survivable and I'm still hear 5 and 1/2 years later at Stage IV. Lung Cancer is not a death sentence and one can live for many many years with it and still have a life. Not saying it is easy or fun but it is doable. I read your blog and you need to stop being so hard on yourself. The blame game serves no purpose, is counter productive and a waste of energy-- no one deserves lung cancer no matter how they got it. Take it one step and one day at a time. Focus on living not dying. Focus on what you can do not what you can't do. One has to adjust as one goes along. Stay positive and attitude plays a major roll. Join a support (people who have been there done that and really understand what it is all about) group or perhaps a phone buddy. If you need to talk PM me more then glad to anytime. Hope this helps and prayers fro the best.

Rich

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Hi again, Deb:

Let's hope the Avastin continues to work for you. I was on it a total of 12 months -- 6 cycles (4 months) in combination with Taxol/Carboplatin, then 12 cycles (8 months) of Avastin alone. The 8 months on Avastin alone were like a vacation, as all of the side effects I had experienced with "Toxic Taxol" gradually disappeared. My hair even grew back after a while. The only down-side I could pin on Avastin was generally slow healing (that's part of its mechanism and probably can't be avoided) so any skin abrasions would take a long time to heal. The same was true of muscle strains -- if I pulled something doing exercises or moving stuff around, the little twinges would accumulate rather than resolving. Now that I've been off Avastin for 4 months (Tarceva instead), these little muscle problems have gradually gone away and my right shoulder range of motion is about where it was before this all started. When Avastin started to run out of steam last summer it was very subtle, and when we eventually switched to Tarceva in October, my lung tumor was still smaller than it had been at diagnosis. I'm definitely an Avastin fan, and I hope to become a Tarceva fan too. They're both made by Genentech -- I wonder if they have a PR position open? :wink:

Maybe I'll see you at the chat session later today (8:00 your time, 3:00 here). I have a computer array in my garage workshop along with remnants of a printing business that we used to have in a nearby town, but I'm frequently rushing to complete jobs that time of day and miss the chat. If I close this down now and get out there, there's a chance I'll be finished by 3:00.

Aloha,

Ned

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