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New to the board- Husband has NSCLC- need encouragement


KathyJ

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Hi all !

I am new here...my husband (Tim) was diagnosed with NSCLC 12/27/02. He went to the ER and they thought he had pneumonia with fluid on his lung, but after a course of antibiotics it did not clear up and we followed up with our Primary care...ended up taking 2 litres of fluid off the lung and the fluid was sent for testing and they found cancer cells in the fluid. He ended up having a VATS Talc Pleurodecis procedure to seal the pleural linings of his lung to prevent any further occurances of fluid. We were told that it was large cell undifferentiated from the test of the fluid. They did a bronchoscopy when they did the VATS and the surgeon saw one tumor in his right lung that was pressing on a airway. All his CT scans, Brain Scan, Bone scans came up clear... but from what I understand as he had a malignant pleural effusion that automatically stages it as IIIB

The oncologist said no surgery, but he has had his first treatment with Carbo/Taxol- once every 21 days and goes for #2 on Monday. He did fairly well with the first one...a little nausea that the meds took care of, a LOT of fatigue, especially at the point when his white cell count dropped, and his hair did start coming out (shaved his head to take care of that !) He will be having 6 treatments and then the onc said she would start radiation either 1/2 through, or after.

Tim decided he did not want to hear "how long"...that he just wanted to know what he needed to do and he is determined to beat this. He has a great attitude...I have (unfortunately) read up on the internet and the statistics are so grim, that I am trying to be positive, but to tell you the truth, they have scared me to death....

I love this man and do not want to lose him. He is only 54 and before this never even got colds. The shortness of breath that one day when we went to the ER was the first and only symptom. My friends say they understand, but they really don't. I have no family..I have no brothers or sisters and my mom is in a nursing home. I do have 2 stepsons, but they have only called their dad twice since they found out in December and never visited him in the hospital when he was there for 6 days for the Talc procedure. I go from being angry to crying... Please tell me there is hope.

Kathy

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There is plenty of hope. You will find a lot of it here.

My father was diagnosed in January with Stage IV NSCLC (squamous cell). He too is determined to fight. He is 60 years old and still plans on being around for many more. Dad also did not ask, "how long?" and his doctors would not tell him anyway. Their philosophy is that they will do what they can, but the rest is in God's hands. They cannot promise a cure (no doctor can ever do that) but they promise to help in the fight. He is receiving chemo and trying to keep his spirits up.

My mother is a 12 year cancer survivor and I know of several others. Although the statistics are grim, statistics are just numbers. Any survivor I know will tell you that a positive attitude will help you beat the statistics.

This message board is full of people with positive attitudes and stories of hope and encouragement. It's a rough road ahead, but there are plenty of people here that wil be along for the ride.

God Bless!!!

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Kathy:

It is unfortunate that you have had to find us. Welcome to Lung Cancer Survivros for Change. As our name implies, we are about survival. I am now an 18 month survivor of NSCLC (Adenocarcinoma). As my signature states, I have had two rounds of surgeries.

All of us, who are survivors, have experienced pain in one form or another. It doesn't matter whether we had surgery, have undergone chemo/radiation, or a combination thereof. We have survived, and are surviving the most deadly form of cancer known to mankind. I remember, all too well, how I was lost in the overwhelming numbers associated with this very devastating disease. None of us will "sugar coat" lung cancer. We all know what can happen and could happen. We also have survivors of those who have passed, who play a very important role here. They have been to the depths of this disease with their loved ones, and have so much to offer.

Many, as I am, are thankful for finding this web site and this message board, because Hope, Love, and Sincerity are found here. Our Hope lies in the fact that all of us believe that Lung Cancer can be and will be beat. Love lies in the fact that we love each each other because of what we are facing indiviudally. Sincerity lies in the fact, that is what we are with each other, sincere. You will also note, that we do have a sense of humor, and can find that at JUST FOR LAUGHS.

We are here, also, for Support. The Support that only others, who have faced lung cancer, and their family and caregivers, can provide. All of us have a story to tell (mine and Estrea's, the founder of LCSC, can be found in ABOUT US, on the Home Page of LCSC). I also direct you to the story of David P, just posted under INSPIRATION. You will eventually, if not already, have a story to tell, and have already started one about you and your husband.

We welcome you. You are among friends.

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Guest Karen L

Hi Kathy

I am new to this board but I'm so glad it came my way. All things have a meaning in life.

Ignore the statistics. Life, love, faith and determination will guide your way together. We have been into this new phase in our lives since June with alot of bumps in the road. We keep moving on and the past 2 weeks have been so encouraging.

Your situation sounds similar to ours with dx, stepchildren etc. Jeff does not have a tumor per say but a sheet of it in the pleura so they can't radiate anything nor really measure anything, other than he is doing really great right now!

One of our biggest set backs was the deep vein thrombosis (blood clots) and all the complications. I believe some people with lung cancer have been placed on Coumadin prophylactically as it can be a side effect with lung CA and chemo. You might ask your oncologist. We are finally getting over that one.

I have more to add but please know we are all here for each other and our friends and loved ones!

Karen

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Please, please, please remember there is always hope. My husband Howard was dx 11/26/02 with NSCLC, Stage II. I fell apart, and then realized I have to be strong for him. He can't see me crying, etc. When I started pulling myself together so did he. He has had 7 chemo treatments and 32 of 35 radiation treatments. You can't imagine the change! He rides his bike daily, 1 to 5 miles, is eating better than he did before the dx, and has even gained weight. He takes his vitamins and the meds they have perscribed for the four days after chemo, but other than that nothing else. We both work at our local hospital here and all the docs are amazed at Howard's progress. The tumor has shrunk about 70%!!! We have only been married for 2 years and we both feel we have many more years left. Attitude is so important when you are fighting this nasty thing. It's hard to be positive every day, but God has gotten us this far, and I know without His strength and healing we would have have made it. I have found that keeping a daily log about Howard's condition has helped when we go to the doctor, and it has helped me by being able to put my emotions down on paper. Please remember that stats are just that - stats. They are complied from all over the world, all ages and conditions. Our doctor told us he doesn't go by the stats, he goes by each patient and how they are responding to the treatment. This website has helped more than words can say. We are all here for you and your husband. If there is anything I can do just let me know!!!

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I just wanted to thank you all for your support and encouragement. I had felt so alone, and hearing stories of people surviving with this has given me the hope I needed.

Tim had his second treatment Monday...saw the onc before and she was very pleased...his blood counts were excellent, he had gained 2 lbs (must be the shake I make him every night!) and she said his lung sounded good...asked her about some new treatments, but she said that they are not FDA approved, but that 6 months to a year down the road as soon as they approve Iressa, she will put him on that. It took a minute or two to sink in..she said 6 months to a year down the road...seems like she must think he is still going to be around then ! More hope !!!! He did well with this treatment, they gave him Zofran with his Reglan and he had NO nausea at all this time..today he was just totally wiped out and slept all day....

Thanks again...god bless....

((((HUGS))))

Kathy

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