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KHK2971

Another Dad with NSCLC, Stage IV

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Hello all-

I've been lurking over the last few weeks trying to soak up as much of the information on this site as I can. In the short amount of time I've been reading, I've come to realize how valuable this site really is. And in keeping with the nightmare we've been living since May 9, I think Friday the 13th is an appropriate day to log in and start.

I've explained our case in my signature so I don't want to waste time going through all of that. As is stands now, Dad is handling his radiation well so far. He's had 6 treatments and will have a total of 13 before he's finished. Because he has a pancoast tumor, he has pain in his shoulder, down through his arm along with numbness in two fingers. He originally went to a neurosurgeon for the pain back in Jan, and that doctor wasted 5 months doing two seperate surgeries on Dad before a chest xray was finally done the beginning of May. We're trying not to focus on that, but it's a hard pill to swallow to think if we'd only had the chest xray sooner, we could have caught it earlier. But, back to radiation, I'm concerned that 13 treatments is not aggressive enough...so far Dad has not had much pain relief and I know the goal of radiation is to alleviate the pain. His radiation oncologist is approaching this palliatively and NOT curatively, and that worries me. I know the chance for cure is slim, but miracles and cures happen everyday. I don't want to put Dad through a painful aggressive treatment, but if it will give him a better chance, I want to be as aggressive as we can. What are your thoughts on this?

I don't want to ramble on too much, but I am looking forward to being a member of this "extended family." It's so helpful to have a resource like this and I'm thankful to those who contribute to this site. You've already made a huge difference with Dad's situation. He's 5-11 and got down to 129 pounds. He was steadily losing weight and had no appetite other than to drink Ensure. Getting 1400-1600 calories down him a day was a chore and that was not enough to even sustain his weight much less make him gain. I got on this site and read a post from a woman who put her husband on GNC's weight gainer 2200. She said her husband gained 15 pounds on chemo. I went directly to GNC, bought the mix and made Dad a shake using Breyer's vanilla, one can of ensure, and a scoop of the 2200 mix. In the 12 days he's been on this shake, he's gained 5 pounds! That is a huge victory in our house and has totally lifted his spirits. I don't remember the name of the woman who posted this helpful info, but THANK YOU...you have no idea what a difference it's made.

Again, thanks for this site and I look forward to learning and giving as much as I can. I'm also going to sign my Mom up so she'll be getting to know you all soon as well.

Take care and I promise my posts won't always be this long!,

Kelly

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Hi Kelly,

I am so sorry to hear about your dad and the fact that you have to grow through this turmoil. It is a hard road with bumps, but with the support of this group it can be a road traveled. My mom was diagnosed in March and I found that time to be the most stressful. I am not knowledgeable enough to know if your dad's radiation treatments are aggressive enough. My mom received 33 treatments and they told her this was all the radiation she could receive. If you have ANY doubts, I think you should seek a second opinion. Well for that matter, I think you should seek a second opinion anyways...especially if the oncologist is treating it pallatively. Ada had given me a link back when I was searching for a doctor to get a second opinion (the second opinion made me be able to sleep at night). It helped me, so here it is:

http://www3.cancer.gov/cancercenters/centerslist.html

There is hope and don't ever lose that. There are people here with encouraging and inspiring stories. Anytime you need support, you should come here. I will include your dad and family in my prayers. Take care,

Andrea

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Sorry to hear about your Dad. I too had a pancoast tumor . You can find my story under Inspiration. I had just turned 50. Before they would do surgery I had radiation and cisplatin and VP16. My phone buddy also had a pancoast tumor. When I was diagnosed he was a 10 yr survivor. He had similiar treatment as I but also had 2 ribs removed. He is a 15 yr suvivor now, in his 70's. What bones did your Dad have it spead too? Is he getting chemo also? I had lost about 30 pounds when I was diagnosed. During my chemo etc I gained a lot of weight, nearly 60 pounds!! :roll::roll: There are several other survivors on this board that have had pancoast tumors. Waiting to hear more from you Donna

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Welcome Kelly,My dad has has sclc, and I know and remember what it is like in the early months. It hasn't gotten "better" emotionally but you learn to deal with it and have a different kind of normal. You will realize that when your parent is doing well, that is your best day. It's a roller coaster but there are survivors! And people here beat this disease and fight this disease each and every day.

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Hi Kelly,

You have come to the right place. We are majororly on the Survivor bandwagon here.

I think your dad will do real well on the treatments that are laid out in your post. There are survivors in every stage 1-4. No one knows except god when were going to go home and until then we fight, fight, fight.

Radiation usually takes about 7-10 treatments before relief is fealt. so hang in there it takes a bit. Also radiation continues to work for 1 month after treatment stops.

Kelly, search out a better doctor if this one isn't positive for you and your dad. Peace of mind of everything in this game.

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welcome kelly, sorry you have to be here also, but we cool folks if you have to be :D as far as aggressive treatments, as long as your dad is ok with it, then do them! Cancer is aggressive so i say be aggressive back

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Welcome Kelly, Mom, and Dad,

This is the place to be if you have this rotten disease...glad you found our supportive group. I'd say get a second opinion, if you haven't already. Dad will be in my prayers.

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Hello Kelly and welcome;

So very sorry to hear about your dad. This disease is an absolute nightmare, but I'm glad you realize that you do not have to go through it alone. You will find understanding, kindness and good info. from the people here. But, most importantly you will find SURVIVORS.

Glad your here and keep us posted. Also, happy your dad is gaining wt.

God bless you and your dad, you'll both be in my prayers

Bobmc - NSCLC- stage IIB- left pneumonectomy- 5/2/01

" absolutely insist on enjoying life today!"

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Kelly-

You can make your posts as long as you want, it helps just to talk about it. Trust me. My mom has NSC adenocarcinoma, stage IV. She has mets to the shoulder, skin on head, and kidney and liver, and she is actually doing well. She is on her second round of Chemo, this time being taxotere, first was taxol/carboplatin, radiation, and she had no results, and thats when they found a new met to her kidney, but the taxotere seems to be doing something though, her pain in her shoulder isn't as bad, and she is having MANY better days now. So, I feel its good that your dad is on taxotere. Its alot more aggresive than the platinum based chemos. Never give up hope, and like someone said make sure they treat it aggressively. There are many survivors. My mom is one,,,she was diagnosed in Dec. 2002. Just make sure dad gets alot of fluids. Keep us posted. This is a great bunch to talk to. They are very knowledgable and encouraging. Its good to talk to them.

PM me anytime you need to.

Rana

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Hi All--Thanks so much for the warm wishes of welcome and encouragement. I really appreciate the responses to my post and I look forward to getting to know all of you better.

I'm 26, an only child, and I don't live at home with my parents but I have been here off and on trying to help make decisions and look after Daddy. I have to go back to work on Monday and since I live 4 hours away, it's tearing my heart out. I want to quit my job and move home with Mom and Dad, but Dad is vehemently opposed to that. I know there can be other jobs, but he's the only Dad I'm ever going to have. I just don't want to wake up one day and wish I'd moved home to be with him. I guess we'll just have to wait and see how everything goes.

Again, thanks to you all for the support. I'm going to get Mom signed in tomorrow...I think this site would be really helpful to her. A friend of ours has throat cancer and he told Dad not too long ago that the patient doesn't just get cancer, the whole family gets cancer. I think that's true.

You're all in my prayers!

Kelly

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Guest DaveG

Hi:

I am a Stage IV NSCLC, Adenocarcinoma with sytemic mets to the lymphatic system. I was first diagnosed, Stage I, adenocarcinoma in September 2001. I had 2 surgeries, the first in oct 2001 and the second in September 2002. The first was for a 5-6 cm size tumor, lowerlobe right lung. Only the tumor was resected and I lost about 1/3 of the right lower lobe and 1/6 of the right upper lobe. The second surgery proved to be a benign tumor.

When I went back for my 6 month surgery follow up, a CT Scan revealed lymph node involvement in my chest area. My oncologist then ordered a PET Scan which revealed sytemic lymphatic system involvement with nodes in my left neck, medialstenial area, a large tumor around my heart, tumors in my diaphram, and a node in my left groin. Because of the extemsiveness I was staged at Stage IV. A biopsy of the neck lymph nodes revealed lung cancer mets, specifically adenocarcinoma.

I have been told there is no cure, but it can be brought under control and can be kept under control. My goal is to live 18 years and longer as that will allow my wife and I to celebrate our 50th Wedding Anniversary. So far it appears the chemo is working as the nodes in my neck have shrunk.

Many of us will use our own case as an example for others. I have all the hope in the world that I will beat this. I don't expect a cure, but I do expect control and keep the cancer arrested.

We are about survivorship and we strive to survive this disease. I am not going to say it has been easy, as I have had my share of pain with 2 surgeries. Right now I am on oxycontin and oxycondone to keep pain under control, what lttle I have. My weight has gone down about 10 lbs since being on chemo, as my appetite varies. Some days I could "eat a horse", and others I have little to no appetite at all. I have also found that my taste for certain foods has changed. This could be the same with your dad as well. It is not uncommon to loose weight during chemo, especially when combined with radiation. Because of the extensiveness of the cancer in my lymphatic system, radiation was not an option with me.

As far as this message board and forum goes, we provide you with hope love, faith and support. You can come here and vent, tell funny stories, cry, or just plain let your emotions out. Please understand, we have been there. We have experienced all sides of this disease called lung cancer. We have cried, we have been depressed, we have gone through denial, we have had self pity, we have been to the depths and the heights of this disease. We have, and are still, riding the roller coaster. We understand all too well what you and your father are going through. We want your father to succeed. Just remember your father is the determining factor, not the doctor(s)

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Kelly, I had a tumor (I was going to say "my" tumor, but I'm not about to acknowledge that it was mine. It was a foreign thing that I had to get rid of) that was high on my left lung. It was a superior sulcus tumor by position. I'm not sure I know the difference between that and a pancoast tumor. Maybe it's if symptoms appear. Hey, Donna, do you now the difference? I was told I was "not a candidate for surgery." Jeeezsh. Those doctors can be so casual about our lives. My oncologist said she was going to be very aggressive! I was put on chemo & radiation, then had a successful surgery.

So, Kelly, if your dad wants aggressive treatment, I think he should get a second and 3rd opinion, if necessary. I learned early on that the patient has to take control of his life!

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Hey Kelly, welcome to the family.

Your posts can be as long as you like - that's why we choose to be here.

I can't give you any technical advice for your dad; things have changed so much since I went through my ordeal -- but I'm getting a lot of practice with cheerleading!! On that note, your dad's state of mind at this point needs to stay strong, with a good fighting attitude. Your idea to move home is a nice thought, but in my opinion, it might signal to him that you think the end is near, and could negatively affect his outlook on things. I know it's only natural to want to spend all the time you can with your dad in this situation, but I've seen so many success stories on this site since I discovered it last November to know that everyone has a decent chance at recovery with this seemingly unpredictable disease.

Only my opinion Kelly. Take care, and I'd like to talk with your dad sometime.

David P.

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Guest DaveG

Now I suppose that since David said he is a cheerleader, he will want a cheerleader outfit like Judy's cheeleading outfit. Kelly, don't mind me, but you have just walked into a long standing joke that goes back several months. Judy has been our cheerleader and one time she posted a picture of a cheerleader, trying to pass it off as her :lol::lol::lol: (we knew better).

Just don't mind our humor, we like to laugh about things too.

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Kelly, don't mind us, really.

Hey Dave, how ya doin'? You look good in bald. I'd LOVE a cheerleading outfit just like Judy's - I've got pretty nice gams. What do you say Judy, can I borrow it once in a while??

David

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Hi Kelly-

I guess I'm a bit late with this post, but I haven't been online much lately.

Like Donna, I'm also a pancoast tumor survivor. Taxol/carbo and 28 rads. It was at least a few weeks before I felt any real relief, and I have a few less years than your dad.

The weight gain is crucial as is attitude. Add extra anything whenever you can. Wheat germ was a good way to add some extra calories as well as the Mega shakes you mentioned. Also, have him eat small amounts of ice cream during the day....keep some next to him so he can take a spoonful every so often if he can. Plenty of juice and water is essential as well. And ATTITUDE ATTITUDE ATTITUDE.

Be well.

Rocco

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Welcome Kelly,

Sorry I'm coming so late to this post's party. But I just wanted to say welcome to the family, and I'm really sorry you have to be here.

I can't add much more than what has already been said other than I am going to be praying for you and your father.

Carleen

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Guest DaveG

Kelly:

Donn't mind David, Judy and I, we have a tendancy to get a little crazy everynow and then. I guess it has something to do with the fact that we have lung cancer and have found that humor takes away the pain. Laughter is good and it does wonders for the morale. We have known each quite some time and know that we can rag on each other and all the others seem to get off on what we do.

We all realize that lung cancer is serious, but breaking up the seriousness does help one content with what is going on. We all pray that each and everyone of us will beat this disease and survive for years. David P. is our number one success story living 26 years + with lung cancer and we highly respect his succeess and what he has done with it. Judy is also a few years out as well and she is our second in command for comedy on the site, not to be outdown by Ry. I just kind of go with the flow, as I am still kind of a rank amateur at this Stage IV stuff, but am in actuality a 21 month survivor as I was a Stage I since September 2001.

What you have seen is the other side of LCSC, which I hope you are satisfied with. We try hard to laugh and have a good time, but on the other hand we can cry just as hard as we laugh and we can change gears in the snap of two fingers.

So as you see we have a loving and very caring group of people here.

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Kelly,

Welcome, though we hate to get new people because that means lung cancer is in your life. It is very hard at the beginning. Then as Katie said you find your new "normal" life and it's constantly changing. Can't give you much info, but my husband was told he had 2 weeks when he went to emergancy. Now it's 8 months later. Go for a second opinion. You have to feel good about your doctor.

Will add you and your dad to my prayer list.

Rosanne

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