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Posted

Hello Everyone,

I had joined this group over three years ago, but got attached to another site over the interim. That board changed once, but now a second time, and I am not comfortable with its much larger venue.

I lost my password and username from first joining here at LCSC, so I re-registered. Forgive me, I'm a bit older than I was back then, and not as comfortable with the unfamiliar. :wink:

My husband may be remembered by some of you. His name is Bill and presently, on a new regime of Avastin/Taxol/carboplatin (every three weeks).

His last scans, taken two weeks ago, and after two rounds, showed shrinkage. :) This has been an over three-year journey for us.

Glad to be back and to "meet you all."

Barbara

Posted

I remember you, Barbara. I read on LCA for all your research! I do believe I even PM'd you. Do you remember? But I can't remember your screen name here either. I know it wasn't the same as the other site though. It took me a bit to figure out you were one and the same. I, too, am totally boggled by what has been done over there. I never posted a thing, but would read and I 'know' lots of the folks. Maybe with time things will become better????

At any rate, WELCOME back here. Hopefully in no time at all others will get to know you and Bill and you will find support. You and Bill are an awesome team. Glad you are with us.

Kasey

Posted

Hello-Barbara

Everyone is looking for you on the other site and wondering"where is Barbara Ellen". I do not write much but I have been on both sites since Nov. 2006 and I read everyday.

You are always an inspiration for me, when I get low because you two have been where we have been.

Welcome-Kathy Toma (sktoma)

Posted

Hey there, Jamie my dear,

I am so glad to be back. To be honest, right now, I am glad to be back anywhere that I can read and post without having to figure out too much in the format.

As things march on, I am seeing good things down the road as far as research goes.

That is my favorite subject. Wouldn't you know it? My eyes are going just as I have become compulsive about reading? :lol:

Thank you for all of your encouragement over the years, Jamie.

Love you,

Barbara

"Jyoung20"]Hey Sweet Barbara!!

I'm sooo glad you are here!!!

xoxo

Jamie

Posted

Hello again, Kasey,

Yes,I DO remember you. You wrote to me a long time ago. It was a really nice message. I think it was when the other site was still SLCA when Dave Grant was still alive. What a wonderful person he was!

I am so very glad that you gave me this present reply. You have given me a lovely gift.

May you be continually blessed,

Barbara (aka BarbaraEllen) :roll:

"Kasey"]I remember you, Barbara. I read on LCA for all your research! I do believe I even PM'd you. Do you remember? But I can't remember your screen name here either. I know it wasn't the same as the other site though. It took me a bit to figure out you were one and the same. I, too, am totally boggled by what has been done over there. I never posted a thing, but would read and I 'know' lots of the folks. Maybe with time things will become better????

At any rate, WELCOME back here. Hopefully in no time at all others will get to know you and Bill and you will find support. You and Bill are an awesome team. Glad you are with us.

Kasey

Posted

Hello Gail,

How nice that you remember.

Yes, I am in New Jersey, and up here in Bergen County.

Actually, the town in which I live is very small - one-mile square and was once called "Our Town," after the play.

Good to "see" you again. I will try to get a photo. We changed our computer and I cannot figure out the camera thing-a-majig. But, I WILL. :wink:

Barbara

"gail"]I remember you too!! Both of us from NJ and all. glad to see you again!

gail

Posted

Patti,

Forgive me if this is a repeat of a reply to you. It is a wee bit "new again" to me.

I can tell you that this board has always been great for responding, and for people posting their "histories."

Without all that, we cannot tell the diagnosis, the stage, and anything that gives a clue to where a person is.

That is why, for good or ill, I will always tell you how Bill is doing. We cannot help him or anyone else without that info.

We want to learn how to beat this, as one wonderful person has called it, "this demon." I know, it sounds as though it is giving it personification, but it is a demon that needs kicking down - every chance we can.

Barbara

"Patti B"]Barb-

Re-welcome to you!!! I was not around here back then - hoping and praying for lots and lots of good news on your hubbie!!!

Hugs - Patti

Posted

Hi There, Connie,

Bill is beating the odds (our mantra). I keep telling him that. Today, over at the Cancer Center at HUMC, we saw a man (who both of us had known over sixty years ago). I was hesitant about approaching him, and had to put on my eyeglasses to make doubly sure he was who I thought he was. (I had heard them call out his name.)

It was he. He had been diagnosed with lung cancer w/mets to liver.

They must have thought it was "old-home week" in the waiting area. He and his wife were so happy to see a survivor (Bill). They remembered him when he was young, blonde and full of vim and vigor.

He and his wife were almost kids when we had seen them last. Thankfully, they (the hospital staff)call out names very loudly, or we never would have connected.

My hope is that we will all see more effective treatments coming down the pipeline and giving us even better, non-toxic chemos in which to place our hope.

Barbara

"Connie B"]Welcome home Barb, so very good to see you again and to hear your hubby is still beating the odds! :wink:
Posted

What a wonderful story Barb. You know, we lung cancer survivors want so bad to hear LONG TERM lung cancer survivor stories, I can't even begin to tell you. I know when I was dx.d 12+ years ago I didn't know ANYONE who survivied more then a year with it. (hence my family history). And then I met someone who was a lc survivor, :D I latched onto him like stink on pooh! :roll::wink: He's a 13+ years lc survivor and he is STILL cancer free and doing well today. He too was a stage IIIB Squamous Cell he had.

I truely HOPE there will be NEW ways of treating Lung cancer and other cancers very soon in the future. I know these treatments WILL change, but just not soon enough. And I know they are coming. :wink:

It's nice to have you back here at LCSC. I hope you'll stick around.

Posted

Hello Connie,

Thank you for the uplifting reply. I love the story about the 12-year survivor.

Thank you, Connie. :D

The only reason I didn't post here much back then was having become engrossed in posting news items, first at SLCA, and then at the former site.

After reading your interest in lung cancer, you would appreciate the compulsion in searching out new, innovative, and effective treatments. It can become an obsession. :roll:

Literally hours were spent searching, posting, and then trying to reply to those who either had lost someone to this disease, had good scans, and those who had wonderful celebrations of good news.

The good news is that there are some very promising treatments out there and in the pipeline. Of course, we could do with a major breakthrough.

Another hope is that this will truly become a more easily-detected cancer, and at a much earlier stage.

Right now, Bill is doing well (thank God). May he continue to be so. May all of us who are survivors, and those of us who are their loved ones be encouraged.

Glad to be back. :D

Barbara

"Connie B"]What a wonderful story Barb. You know, we lung cancer survivors want so bad to hear LONG TERM lung cancer survivor stories, I can't even begin to tell you. I know when I was dx.d 12+ years ago I didn't know ANYONE who survivied more then a year with it. (hence my family history). And then I met someone who was a lc survivor, :D I latched onto him like stink on pooh! :roll::wink: He's a 13+ years lc survivor and he is STILL cancer free and doing well today. He too was a stage IIIB Squamous Cell he had.

I truely HOPE there will be NEW ways of treating Lung cancer and other cancers very soon in the future. I know these treatments WILL change, but just not soon enough. And I know they are coming. :wink:

It's nice to have you back here at LCSC. I hope you'll stick around.

Posted

Dear Katie,

There is much appreciation at having received the warmth here. At this juncture in the journey this means so very much.

Thank you for your lovely welcome, Katie.

Barbara (I hope I didn't miss replying to someone.)

"KatieB"]Welcome back. I'm glad you decided to give us another try and I'm even happier to read how well Bill is doing. We are here for you.
Posted

I guess you already know that you are missed over there. :( You put so much into your research for the site, and many people relied on you.

I haven't quit that board, but I decided to try to be active on this one too - to stay in contact with you and other old friends. I'm sure there's enough need for lung cancer support to keep two boards running.

Actually, this may be serendipitous for me - since I live near Chicago, LUNGevity's home town, maybe I'll find new ways to volunteer :wink:

Susan

Posted

Dear Susan, :D

Yes, I have received several of the most heartwarming messages, and emails. They have brought me to a place where I know there is only one important goal - to get this disease cured for all those most in need - lung cancer survivors and their loved ones.

This site was my original. It has been as though there has been a returning to roots, so to speak.

Susan, no one can belong to too many sites regarding lung cancer. It's just that in my position, and at my age (73) challenges in my life have reached a pinnacle.

Bill is the focas, and all the other "Bills and others" out there.

Thank you, Susan, for your very lovely post. You are very kind.

May you find great opportunities to "spread you wings" in the lung cancer endeavor.

Love, and all the best.

Please, always feel free to contact me. I know this journey - all too well - the good, the bad, and the coming back from it all.

Keep your eye on the goal. We will succeed.

Barbara

"SusanK"]I guess you already know that you are missed over there. :( You put so much into your research for the site, and many people relied on you.

I haven't quit that board, but I decided to try to be active on this one too - to stay in contact with you and other old friends. I'm sure there's enough need for lung cancer support to keep two boards running.

Actually, this may be serendipitous for me - since I live near Chicago, LUNGevity's home town, maybe I'll find new ways to volunteer :wink:

Susan

Posted

Hello Don, :D

I cannot tell you how many times you have helped Bill and me with your postings.

You have shared much information, and ideas through your experience with lung cancer.

Thank you for the welcome, and also for all of your input.

"Attitude, Spirituality, Support and Hope" (Dave Grant)

As always,

Barbara

Posted

Barbaara Ellen,

It's so good to find you here! I was so saddened when you disappeared from the other site.

I wanted to let you know that I have had my first Alimta treatment 3/11 and it appears to be going well.

With your history of Bill you gave me such hope. It's easier to continue with more treatments when you have inspiration from others like yourself.

How is everything going for Bill?

You are my Easter present!

Take care,

Noelle

Posted

Hello Noelle,

It is also good to see you again. I was saddened to leave, but did not want to begin a discussion on leaving.

My membership there went back so long and I knew that someone would be able to figure out that I would need to keep receiving/giving support - somewhere.

This is one disease where bolstering and information needs to be continued onward.

Bill received Alimta (without much other than a bit of fatigue following the infusion) every 3 weeks initially. Then, the doctor stretched it to every 4 weeks. It gave quite a run where life was pretty much "normal."

He is doing well, but he needs to watch the immune system with the regimen he is receiving because it tends to push the wbc's downward.

Many blessings are wished for you, Noelle. You have certainly made my day. :D

Keep remaining positive,

Barbara

Posted

Hi Barbara,

I finally made it here. I know I will be much happier here than the other site. I see some of our friends are moving along too. That's great to have our friends with us.

All my love to you and Bill,

Linda

Posted

Hi There, Linda, :D

I have been offline for a time due to my modem having sung a swan song.

Our son installed the new one that arrived today, and happily am back online.

Not that I was addicted, but Linda, he wasn't out the door two minutes, when I was typing away. :lol: Bill just laughed. He knows me well.

Yes, I see so many here with us. They have joined a warm and gracious group, thankfully. It is enough pressure trying to deal with appointments, scans, and what-not, without trying to negotiate my way through a maze. No doubt many will enjoy the challenge.

I am just too derned old.

Thank you for shouting out the greeting. Love you,

Barbara

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