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new guy guidance..


Guest robd1

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hello all, i stumbled across your site a few weeks ago.. my father recently diagnosed.. treatments havent started yet.. likely chemo and radiation. needless to say we're heartbroken. we dont know what the upcoming months entail. dont even know what to ask. but any feedback, suggestions on how to help my dad, w/be good. my best to all of you.

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Hi Rob,

Welcome to this site. Give your Dad as many hugs as you can, tell him how much you love him as often as you can and just be there to listen and support him in this battle. Come back often with updates, to ask questions or just to let us know how you are doing, we're all here for you, your Dad and your family.

Love and prayers,

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Hi Rob - You're now where so many on this board have been. The fear of what to expect is devastating. The main thing is to try to look at the positive side of things - the wonderful treatment that is now available. My first reaction to hearing a diagnosis of lung cancer is that it's terminal. However, as you can see from this board that there are many long term survivors who have their cancer controlled. My husband's oncologist compares it to diabetes - we at this point can't cure what you have but we can "control" it. It think that that has given us hope - we were shocked and not optimistic when Ron was diagnosed with Stage IV in March 2004. He began treatments in April and was able to do many, many things during the months of weekly trips to the cancer centre. We are happy to report that he's now 10+ months since the initial diagnosis date and is doing great. The journey has not been all bad. It's been scary at times - when Ron lost 30 lbs within three weeks after diagnosis. He couldn't sit up because of extreme back pain. After 5 radiation treatments the pain subsided within one week. When he began chemo he had difficulty with nausea and wasn't able to eat very much at all. But we mixed up some Boost supplement with milk and a wee bit of ice cream (he's diabetic, too) and he seemed to begin to turn around. Within a month or so he started to gain weight and eat well. It wasn't unusual for him to finish chemo at 12:00 and head home to a plate of pasta and meatballs! The nausea was controlled with Zofran. So, all in all, his experience with chemo was not bad. Wonderful strides have been made to control the side effects. His main complaint was fatigue. He hated not having the energy to do what he normally likes to do. He's been working steadily since Sept. and has more energy than I could ever hope for. He's already beaten the 7 month life expectancy statistic and has no intention of giving in to the cancer. One thing I do know is that while we've had to deal with more than our share of bad news we also had a great year. We appreciate our lives so much more. I do dwell sometimes on the negative thoughts of what is in store for him but then I see his big smile and hear his hearty laugh (picture him bending at the waist when he loses it) and I think, that's why this guy is still here - he's fighting this tooth and nail, lives life normally, and has so many people sending prayers up for him. I didn't locate this site until recently but as I think back I would have loved to have talked to people who had this experience at the time of Ron's diagnosis. The sleepness nights, the tears and the constant burden of worry would have been less.

Your dad must be a great guy and I think he''d boast to us that he's got a wonderful son. I was touched with your message mydad/myfriend.

I look forward to your updates.

Here's to success. (This would be me raising a glass of white wine, which I will do this evening).

Janet

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Hi Rob, As stated above this is one of the worst times,not knowing what to expect or what to do or how to feel.There are many here that know a lot and care a lot.Almost anything that comes up,someone here has been there and done it and is still here to answer questions about it.

There are many,many here who make the statistics look like a sheet of used toilet paper.

It is advisable to have someone with your dad(he sounds like a great guy) whenever he goes to any dr. appts. to help listen & ask & advocate for and with him.

Chemo and radiation can be a really tough thing to contend with but it is also worth the discomfort for a lot of us.In my case I was given a death sentence of 6 to 18 months.I'm now almost 2 years out from diagnosis and tho I can't run very far I still am able to do a lot of things and maintain a good quality of life.

Keep us posted and don't be afraid to ask questions.Ask your dad to join us as well.

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Hello, Rob,

You're making a very good first step in becoming an advocate for your Father by educating yourself.

It helps to know the tumor type (Squamous, Adenocarcinoma, Bronchioloalveolar/BAC, Large Cell, Other), the tumor grade (how much or little it resembles the organ or tissue where the primary tumor is located. Translates into how aggressive the tumor may prove to be in it's growth patterns). The stage, which means where it is located in the body and whether or not it has spread. These things are all used to help determine what treatments will be made available to your Father. Other things they look at are his over all health and performance status. His pulmonary function, other health issues that could impact how he handles the side effects from treatment, and his attitude towards the whole process.

I understand how this has impacted the family. I am so sorry you have need to find us. But being diagnosed with Lung Cancer is not an automatic death sentence. There are new treatments coming down the pike every day. And some in existence now that are keeping many of us alive.

Tell you Dad that Fay A. says "The first thing you have to decide is that the life you want to save is worth fighting for. Someone has to be on the list of long term survivors. Let's make it us."

Best Wishes,

Fay A.

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Hi Rob,

Sorry too about your Dad. Support and love and just someone to listen is my thought as to what he would want from you. And when you need support and someone to listen, everyone here will be here for you.

I very much remember a conversation with my adult son a while back now, but he too said he didn't really know what to do, say, or how to help. It's not all that easy to know what to do for a parent . Instinct will take over as things start to unravel over time. I am sure you will do all the right things.

My best to you and your Dad as well as your entire family.

Kate

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Rob ,

I just want to welcome you and let you know that we are happy to have you here with us. The people here are so warm, friendly and willing to help in any way they can. It helps to know that we have each other to lean on and share experiences with. There is so much to be learned here, as well as hopeful stories and loving support. Let us know how we can help.

God Bless,

sue

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Hi Rob and WELCOME!

You said your dad was recently diagnosed. I don't know how long it's been since you knew his diagnosis, but I know it took us a good two weeks before we stepped out of the fog of shock that we were in. It took our son a couple of months, but hubby and I were out there fighting this crappy disease in record time.

It paid off. Like Frank, he had a 6-month death sentence hanging over him. He's now 18 mos. since diagnosis and working full time 10-hr. days.

It will take a while to get over the shock, but if the whole family pulls together with a fighting spirit, things could turn out just fine.

God bless you, Rob, and once again, WELCOME!

Peggy

P.S. Ewwwwwwwwwwww, Frank! This is quite a visual:

There are many,many here who make the statistics look like a sheet of used toilet paper.
:lol::lol::lol::lol::lol:
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Hi Rob,

I just want to extend a warm welcome you and your Dad.

I also was diagnosed at stage lllb nsclc. in ll/02. I was in shock at first and I guess in some ways, I continue...heehee. Shocked that I am still here, that is for sure! (not really) Glad I made up my mind very early on that I was not going to buy into the b.s. of surrendering to this disease. I surrendered in a way, but not physically.

Do not buy into the statistics. Tell your Dad that this IS a survivable illness. Tell him to fight with everything that he has and we will help all that we can. This is an opportunity for growth for everyone involved. It is an opportunity to grow spiritually and emotionally. It is a selfish illness and it is a selfless illness. It is a robber and a giver. It is a contradiction of terms. It is a daily battle that sometimes uses up every waking minute of the day and night to fight.

Knowlege is power. Go back into the archives and read as much as you can. Rich (Dadstimeon) has posted some really good lists of resources of information.

I did not have surgery. My cancer was too far advanced. I am guessing that your dad is not a candidate for surgery either. You can see what kind of radiation and chemo I had that was the treatment of the day two years ago. The radiation has changed for the better since then. If I were to do it over again, I would try to have multiple smaller doses of radiation along with chemo. I read that having two radiations in a day instead of one is better for survival. Also, I would go for the most sophisticated radiation equipment and radiation oncologist that I could find. I have read that targeting the cancer field without destroying surrounding tissue can be accomplished more readily now.

There will be treatment options for your dad. Try to weigh and research as much as you can. If you get hung up on anything, there will probably be someone here on the board who can get you unstuck..

Good luck to you and to your dad. And above all, God bless.

Cindi o'h

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Hi Rob,

Welcom, sorry you had to come to a site like this. But you have come to very caring people who will always be here for you.

Maybe you can tell us some more about his diagnosis. What stage is he in? You can write a little profile of him at the bottom of your profile page.

You are a very concerned son, and you dad is so lucky to have you. Just keep a positive attitude, be there for him. That will give him even more moiviation.

One important point. DO NOT LISTEN TO STATISTICS !!! There are countless people on here who have beaten the odds. You can read their posts.

Maryanne

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Welcome Rob. I am glad you found this place. Hopefully this will be a starting place for you to get some focus. Maybe you can turn your dad on to this site. I remember when I first found out about my cancer, I was skeptical the whole way through, even up to my operation. Educating myself about my cancer helped a lot. It gave me the sense that I was doing something about it and I could know what questions to ask the docs. If you can, attend all the appointments with your dad and take notes. Try to draw up a list of questions before hand. Good luck on your journey with your dad. And remeber, as others have said, this disease is much more manageable these days. One can live with it.

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Hi Rob and welcome. Hope we can be of help. We all know how devastating it is to be told you have lung cancer. I sounds as you have Stageing already that your Dad has been through the many tests that are necessary. I don't know if any one has mentioned it but it is so important that he have someone go with him to Dr appointment carrying a recorder or a notebook. It is so hard to even listen to all the DR. says , never mind remember it. I was lucky my husband was able to get to appointment especially those first few months to help me "hear" and "remember" what information was being given. Now keep us posted . Donna G

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Welcome Rob,

Your dad is fortunate to have you on his team - you're already being so helpful by networking with other LC patients and families. Role models are such a great part of the fight. Hang in there - there are breaks in the clouds when the sun comes shining through.

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