New to the Group and Need Advice.

[IIIp0]

Hello everyone. My name is Beth and I am writing for my husband Bob, who has just been diagnosed with Stage IV NSCLC. We are overwhelmed and shocked at the news and wonder how this could have happened without our knowledge, really?? I guess it just does... His has spread we've been told to the blood - and is now found in the spinal column, left femur, liver and lungs. So while the heart is not in imminent danger per se, the spinal cord may be. More tests are in order. He's been given approximately nine months. My husband says 'we'll just see about that". Any experience, strength or hope you may have about Stave IV and particularly, whether or not the disease can be abated after being in the bloodstream would be welcomed.

I am glad to be among you the strong ones, so that together, we may become stronger.

[Don Wood]

Hi, Beth, and welcome to the little family here. My wife, Lucie, has Stage IV NSCLC, originally with five bone mets. She was given 8 months. Presently, she is a 15 month survivior, and doing fine. Her last PET scan shows things looking pretty good. We have learned to live day to day, but to have goals and work toward them. Lucie just got a laptop computer for Christmas and is learning to use it. We have a goal to visit Scotland in May. There's a lot of info and support here, so don't be reluctant to posjt. Blessings. Don

[bobmc]

Hello Beth.

Welcome and so very sorry to hear of Bob's dx., Yes, this is such a terrible disease and turns everything upside down on us.

First thing I wanted to say to you is to screw the odds, only God knows when it's our time and this disease is beatable. Many here are doing just that and the more your here the more you'll see it. So tell your hubby he's absolutely right when he says " we'll just see about it ". What you do need to do is to be an advocate for your our health. That means to be prepared, know the disease, ask questions, look for the best treatments get treatment at a cancer center by cancer doc.'s. It's a whole lot of being a pain in the a-- but it helps. And, I must say the best place to start is right here!!, We don't go through this disease alone.

so again, welcome and you and Bob will be in my prayers.

God bless and stay well

Bobmc- NSCLC- stageIIB- left pneumonectomy- 5/2/01

MRI's taken 12/18/03 - 2 brain mets found- named em Frick & Frack

"Absolutely insist on enjoying life today!"

[kimblanchard]

Hi Beth,

Welcome to our family. I am so sorry you find the need to be here. I understand the disbelief you are presently feeling. My husband was diagnosed in Nov 02 with Non small cell lung cancer with mets to the brain and bones. He was given 2-6 months to live and right now is responding well to chemo. Hang in there dear, we will help you through this.

Blessings to you both,

Peg

[DeanCarl]

Beth,

So sorry you had to seek us out, but so glad you found us.

First and formost ... the next time a doctor (or anyone else for that matter) tells you or Bob he has X amount of time left ... ask them where and when they got their "God card" and if it's still valid.

If you look at the index to this board and look under the intro to the late stage NSCLC forum you see the words "No matter what stage you are diagnosed at...remember there are survivors who have beaten it at that stage!"

I second what both Bob and Don have said. Get all the information you can on your disease. With that information Bob and you can take charge of Bob's treatment.

And to further reiterate what bobmc said: None of us here try to do this on our own. We do it together, no matter what our particualar situation mgiht be or in what particular way this disease has affected us.

You don't know it, yet, but you've stumbled on one of those very special places that come to exist, now and then, in this world. I first came here with a "mass" in my lung found through x-rays taken because of pneumonia symptoms. I've since been through the emotional wringer of hope, then despair, then hope again and back to despair as I found out more and more about what was going on inside my body. There is NO way I could have survived all that emotionaly without the support and caring I found here.

The road you and Bob are on is a rocky one, but it need not be traveled alone. Stay with us, lean on us and let us know how you and Bob are doing.

You are both in my prayers tonight.

Dean

[Ry]

Welcome come and lean on us whenever you want.

"We'll just see about that". Ummmmmmmmmm where have I seen this statement before? I know in dadstimeon's signature (someone else's too that I can't remember). Your husband can find lots of buddies here to see him through this.

All the best to you~

[Margaret]

Hi Beth and Bob,

You might like to look at this site for some things to keep in mind: http://www.blochcancer.org/

You are in a good place here and you'll find that you are not alone in this fight and that we know what you are saying. At some level, we have all experienced those same emotions.

Prayers and Peace,

Margaret

[dadstimeon]

Hi Beth,

I'm very sorry to hear about your husband Bob. This is the place to be. Great people with lots of information, support and caring. I also have it in my bloodstream. Diagnosed in both lungs and adrenal glands. Had great success with chemo and will start Iresssa in middle of January. See my signature. As everyone has said nobody can say for sure how long. Be pro-active. Stay positive and focused. Learn as much as you can. Stay with us. Also down the line join a support group. They have them for both people with lung cancer and there care givers. They are a great source of information and support as well. My prayers are with the both of you. Peace, take are and God Bless.

Rich

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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 / That’s The Key

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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 ... 08,00.html (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)

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If I Could Catch a Rainbow:

If I could catch a rainbow, I would do it just for you, And share with you its beauty, On the days you’re feeling blue. If I could build a mountain, You call your very own, A place to find serenity, A place to be alone. If I could take your troubles, I would toss them in the sea, But all these things I’m finding, Are impossible for me. I cannot build a mountain, Or catch a rainbow fair, But let me be what I know best A friend that’s always there. Author Unknown

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[Donna G]

Beth glad you are here. There is a wealth of information at this site. Real people dealing with this disease. I pray that you find the support you need with us. Donna G

[Guest cbysea1]

Hello Beth,

I know how scared you must be.There is so much to learn , so quickly.

This is a great place for information and understanding.

All I can say is , I have met so many people with "terminal" cancer who are in remission or healed and heard their stories ,that I believe anything is possible.

I send a prayer for you and your husband,

Cheryl_child of God

[shirleyb]

Beth and Bob,

I too am sorry you had to find us. When you first find out that you are ill, it is so hard.

There are so many here that have "good" news to tell, even at the stage you are at. Read through some of the previous posts. You will find lots of good advise and success stories.

Take each day as a blessing and live your lives as best you can. Do what you have to do. But don't forget to remember the special things and what life is about.

If you have questions, this is one of the best places to ask them. So many here are willing to share what knowledge they have, and if they don't have the answers, they share support.

I wish you the best in the toughest fight of your lives.

Much love,

Shirley

[karen335]

Beth,

Welcome! Sorry we all have to meet here but we are all family. We rely on each other for information, support and we care about one another. This site will be a lot of support for you and Bob as you go down the path of this disease. It has been for me. We are all survivors and so is your husband. You and Bob are in my prayers... Take care and come here often for whatever reason.

Peace and God Bless

Karen

[MO_Sugar]

Welcome Beth and Bob. You have found the most caring, compassionate group of people on the net.

God Bless,

MO

[paddy]

Hello Beth and Welcome! My thoughts and prayers are with you and your husband. It seems that NSCLC , particularly the "adino" type, is an especially stealthy monster. Even a pulmonary specialist, examining my husband for "sleep apnea," (weeks before he was diagnosed,) didn't pick up on it.

"David", and I had also been to our family doc., so many times, complaining of his wheezing, fatigue and weight loss. The doc said that he thought the wheezing was due to the sleep apnea and he declared the weight loss "Wonderful,"and asked how Dave had done it! " The fatigue he blamed on depression and wanted to double up his medication ! I told the Doc.,that, (with respect,) I thought Dave was depressed, "because he was feeling ill!! I also said that I thought losing thirteen pounds in three weeks was too great a loss and that I hadn't been married to my husband for almost 40yrs NOT to know that there was something else wrong with him!I think that got through to him, andto cut a long story short , it was found, (that very afternoon,) that David's lung was full of fluid. Like you and your husband we were so shocked , cancer was the last thing we expected as he had never smoked and been a very fit person most of his life, ( before his stroke anyway.) As folks on this board have expressed before, it woud be a wonderful thing if we could have some simple sort of test for this disease, it would save so much misery and suffering.

I am fairly new to this group too and have found everyone so friendly and supportive. I hope you will stay on with us. Please feel free to PM me if you would like to. Don't give up, and take lots of deep breaths when you feel the fear, I find this helps.

Love,

Paddy

[IIIp0]

Hello Dear Survivor Family, Beth here. Just met with doctor and got the pathology report back from Bob's biopsy and two doctors concur that it is now small cell carcinoma and not non-small cell as originally thought.

He started his first round of chemo today and did really well -- spirits high boy~ we're gona nip this thing in the bud................. and the doctors on the other hand, are saying like, 'we'll give you a 50/50 to make it till the next four or five months'.

Meanwhile, we're praying that his regimen of taxol and chemoplatin [sp??] will kill these turmors in his spine, that's where he's experiencing the most pain..... I don't like this one little bit.

Thanks for listening and for being here. I have a feeling it's not going to be a fun ride.....

Hugs to all -

Beth

[betplace]

Beth, so sorry that you have to be here, I have added both of you to my prayers, good luck fighting the beast!

Betty

[lilyjohn]

Beth

Sorry to put it so bluntly but his doctor sounds like the one who is the looser. That attitude does nothing for your husband. Have you thought about a second opinion? I think I sent you a pm about my (Johnny's ) experience with the carboplatin/taxol. It was really easy to tolerate. It also shrunk the nodules but he had NSCLC. Glad to hear tho that you have something started but I would check for that second opinion. Lillian

[Lisa O]

I am so sorry the doctors are trying to rob you of your fight. Don't let them. It sounds like both of you are strapped in and hanging on -- re- read the posts on the failure rate of doctor's predictions whenever you lose hope. While all humans are terminal in one way or another... we all have the same goal of quality time. I wish you both the very best. Hang in there.

Lisa

[J.C.]

Beth and Bob,

You found a place where there is a lot of shoulders to lean on,

but sorry you had to look for it.

Doctors are not God, only Him, knows statistics, so let the doctors talk

and do your best to make them wrong.

Prayers going for both of you.

J.C.