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Hello from Ohio


LisaEz

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Hello everyone. I've been reading all around the forums since yesterday when I found this site. I am here because I just found out on Wednesday that my beloved father has been diagnosed with lung cancer. I don't know a lot of details as I haven't been able to be at the hospital with him and my stepmom is so shocked and upset that she isn't remembering all the details of what the doctors are telling her. I do know that it's non-small cell and it's Stage IV.

My dad has been very sick with a lot of things for several years. In a nutshell, he had heart bypass surgery in late 2004 and came out of it with 2 hospital infections which nearly killed him-MRSA and some other not fun infections. He ended up on life support, with congestive heart failure and renal failure. He was in the hospital for 8 months and in rehab for a couple more before he finally made it home. He has diabetes and ended up with a horrible bedsore that also almost killed him. Since then he has been very frail and fighting to get his health back to even close to what it was before he got the surgery.

A month ago he was hospitalized because he had a UTI that wouldn't clear up because for him, "normal" antibiotics don't do anything anymore and he needed IV a/b to get well. They told us then that he had pneumonia, which he always gets when in the hospital. He was home for a week when he started screaming in pain from his back. He's been diagnosed with spinal stenosis and degenerative disc disease so my stepmom has just figured that is why he's been complaining of so much pain in his back, but when he started yelling in pain she knew something was wrong and was going to take him to the ER when she got home from work that night. Then he fell and had to be taken right in. In the ER they discovered that he had a 3x3cm mass on his spine that had caused one of his vertebrae to crack, hence the pain. They told my stepmom it was possibly cancer. Of course I ran straight to Google and read that at his age, it was probably metastasized lung cancer, and sure enough, a week later that is our diagnosis.

I am numb and in shock. I haven't cried a single tear yet. I guess I have been prepared for him to keel over and die, perhaps from a heart attack or stroke, but I didn't expect that he'd have this to contend with on top of everything else. He is a former smoker, so I guess it's not a complete surprise. My heart is heavy, though, because I just lost my father-in-law to leukemia two years ago. For my family and my children to have to go through this again breaks my heart-most especially for my father, of course.

Right now he's still in the hospital he was in after he got so sick 4 years ago-a place my stepmom trusts and is comfortable in. His onc. there is treating the spinal tumor with radiation in hopes of relieving his pain, but isn't planning on treating his lung cancer at this time. He said we have 9-12 months with dad left. We live in . where we have a wonderful cancer hospital at . However, that is where my dad had his heart surgery and my stepmom is dead-set against him going back there. I've tried to explain to her that the cancer part is separate and different, and that right now he needs to be evaluated by a second doctor and have his treatment options explored-especially the possibility of clinical trials. If we can buy him extra time and a decent quality of life for longer, I want to do that. He is my children's only remaining grandpa....I can't just let him go without trying to fight. So now I am trying to convince my stepmom to take him to . after he's released from this other hospital. (Which is a great hospital too, -just not a cancer hospital....).

Oh, and to top it off, due to his other health issues, he still hasn't been told that he's got late stage cancer and that he's dying. She wants to get him to rehab first and get him stronger before she tells him. I respect that, she needs to do what is right and she knows him best. It's hard for me, though, not to be able to talk to him about this. I know there will be time, though, once he does know. I just want him to know so he can help participate in the decisions about where we go from here and whether or not to pursue another opinion, etc...

Suggestions are always welcome as I am here to learn all I can. Thanks in advance for all the support and love that I see here. I know it will be a vaulable resource in the months to come, and I hope to be able to give as much as I get.

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First of many Lisa, Get a notebook for You and mom to write everything in. Every question and every answer!! That's the best way to keep up with every thing. Write down Dads Med history so you have it handy all the time and include all medications!!

Go and be upset and mad and everything else. You have to get ready for the fight of your dads Life next!!! You are advocating for his medical care and that's a big responsibility to have !! cry scream rant yell cuss what ever you want to do!!

Start a profile here for dads medical condition and treatments!!! at the top of the page you will see a button on the end that says profile. Click on that and you have a new window. Fill in the info and in the middle of the page is a box. Put all treatments in that box and med conditions. It helps us in order to help you!! We may have members who have same med problems and or same treatment plans. We can help with side effects from that info!!

If your dads doctor gives him the old,"This much Time" lecture, don't pay attention to it. most people here have past that number lots of times.. Nothing but statistic and we don't believe in those!!!

next thing is to go to this site and sign up. IT is free and Dr West is our resident oncologist. Many members here are also over there at his site as well. He is a Lung cancer Oncologist with the Swedish Institute in Seattle Washington. He volunteers in spare time to answer questions and address medical issues we have!! Here is his site ......

http://cancergrace.org/

Hang in there.. Your gonna get more responses through out the weekend, and monday !! Its Saturday and we are busy living life to the fullest around here!!!!! :wink::lol::)

Hugs and Prayers !!!

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Welcome Lisa. I agree with Randy. A notebook, extra ears, perhaps a tape recorder all help to go over what the Doctor says. It is so upseting it is hard to listen and remember details.

I am glad they are working on the spine and helping rid of the pain.

Please keep us posted.

Donna G

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Welcome and sorry to see you here. Do what you can.

Personally, I'm not in favor of keeping the dx from him. He needs to be able to have some say over his treatment. Having it come out unintentionally in days or weeks would be worse. And you need to be able to share your feelings and concerns. This affects you and your entire family.

It sounds like he has been through a lot in the last few years. A fighter? That will come in handy. He probably already know more than you think he does.

And baby, we are all dying from the moment we are born. Cancer just has a way of highlighting it, and sometimes, increasing the speed.

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Thanks for the welcome, it's means so much. :) I just got back from a quick visit to see my dad. He now knows that his cancer is terminal. He asked my stepmom last night, and she is on a "don't lie, but don't offer information" stint right now. So when he asked, she answered him honestly. He didn't ask the doc's prognosis, so she didn't mention it. He had just been given his pain meds before I got there so he was pretty loopy. He managed to tell me that he has a "virulent cancer with a prognosis that doesn't look good" before he got too loopy to talk much. I asked him how that made him feel and he said scared, but then he started talking about the Harry Potter movie that was on TV. So, we're on the path of letting him know what is going on....the only thing he doesn't know right now is how long the onc said he has, and since that is just an educated guess it's okay if he hasn't heard that part yet.

When she told him, my stepmom also told him that I have been looking up information on the 'net and that when he's well enough we'll get a second opinion, so it sounds like she is loosening up as far as getting him to the cancer hospital so we can see if anything can be done to help him. She can't get over the fact that he's had so many chest xrays in the past 4 years and that no one saw the cancer until now. She seems to be bouncing back some and starting to show some fight....and yes, he's quite a fighter too. When he got so sick with MRSA (it was actually in his breastbone, which had to be removed so he only has his ribcage protecting his heart) there were 3 other men who all had exactly what he had-diabetes, heart disease and post-operative MRSA....they all died except for him. I just hope he has enough left in him to give this a good go too.

I have already started a notebook with information for him and my stepmom. His name is Bill, her name is Susan. One thing I'd like to know about is any supplements that we could consider starting him on for boosting his immune system, etc....His medical situations are complicated so we'll have to clear everything through his doctors, but perhaps there are some relatively harmless things we can get him started on before we can get the second opinion?

Thanks again for the welcome and the help. I'll work on starting to add his info to the profile as I get the chance. It's hard to find much time to be on the computer with a toddler trying to "help" all the time.

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Lisa make sure he gets plenty of water for starters. Dehydration is a witch to deal with. Make sure he can eat whatever he wants 24/7 basically. Appetite gets messed up with cancer and cachexia is no fun either. Cachexia is also called the wasting disease. Its what happens when body doesn't get enough nutrients and Minerals basically!! Hard if not impossible to reverse. as far as food goes, for the blood cells, think red and green Veggies and Fruits mostly. Smoothies are great and ensure is also loaded with nutrients. Ensure and Boost can be brought in and left in the room and make sure nursing staff knows its there for when Dad gets thirsty or Hungry. Its a 24/7 thing!! Those are my thoughts for now until he is home and feeling better!!

Keep dad informed and let him make his own decisions while he can. Look in the Inspirational and good news forums to get some motivation for now. Every Little bit helps.

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Hi, Lisa, welcome to the group.

I won't kid you, this is a tough one. Being "Stage IV" is not the biggest part of the problem (we have many people here who have been Stage IV for years and are doing well), and neither is the "terminal" or "incurable" part (we're all terminal in one sense of the word, and most of us are living with a number of incurable conditions). Rather, the greatest obstacle is your dad's general physical condition. Although his cancer may be very treatable, all of the available treatments come at a cost in side effects, and a patient needs some reserves of strength in order to tolerate the treatments. If he can develop those reserves, there's a realistic chance for the treatments to do more good than harm.

Don't get locked in on the 9-12 months thing. That's just a general average/mean for a very large group of people with a similar diagnosis, and there's a great deal of variation from one individual to another. I also agree that it would be worth your time to visit cancergrace.org. You can browse the articles and forum messages, and ask whatever questions you may have with the expectation of getting an authoritative, helpful response within 24 hours. Best wishes and Aloha,

Ned

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All I can do is add my welcome and sorry you need to be here. As so many have said, statistics don't mean anything in the reality of life. They are just a way for the medical world to say "we don't know any more than you do". Keep up your spirits, try to keep the family positive, try to keep dad hydrated and nurished, and pray to anything you believe in. You are not alone.

Hugggsss

Donny

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Welcome Lisa,

Sorry you have to be here but glad you found us. You have been given a lot of good advise. It's understandable how everyone feels and still being in shock mode. I can relate to your father because I also have (as well other members) several health (see my profile) issues which add to the mix for sure. I'm Stage IV (right now lung cancer is the least of my problems) and seven years out and as mentioned a lot of members here are survivors living many years after their prognoses. Take it one day/one step at a time. Over in the LC Survivors Forum there is a sticky post (Helpful Links / Questions to ask your Doctor) you might find helpful. Stay with us and keep us posted on how you dad is doing. As long as there is life there is HOPE!

Prayers for the best,

Rich

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I am so sorry your dad got this diagnosis. It sounds like he has been through a lot. But, he hasn't given up has he? Sounds like he is a fighter. I agree with the others who have already replied--keep him hydrated and nourished. Keep him filled up with all kinds of good things, basically follow the food pyramid. You'll have people knocking down your door (and email) with the latest miracle cures, but be careful and be wary. There are things that are PROVEN to work in the medical arena. I am also Stage IV NSLC, did a double chemo Carboplatin and Alimta, plus a biological drug called Avistin. It did wonders for me, and I didn't even get sick enough to vomit. The anti-nausea treatments these days are awesome. You never know what is going to work for each person, and your dad may be one of the fortunate ones. Be strong and don't worry about statistics--we make our own statistics these days.

The best to you and your family

Joyce

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Lisa,

Welcome to our corner of the internet! I hope you will find it to be a place of support, love and HOPE! My mom was dx with Stage IV NSCLC 30 months ago. She also had mets to the spine and it was her back pain that lead to the discovery of the lung tumor. The median prognosis for her would have been the same as your dad's, but its 30 months later and she is still here. Not only that we all just traveled to attend a family wedding this weekend and she had a ball. So DON"T buy into the prognosis timeline. Everyone responds a little differently. The radiation should help to relieve his back pain. I agree that you should get a second opinion about further treatment options. His other medica codnitions may ake that more difficult, but I'm a big believer in getting ALL the info possible before making the treatment/no treatment decision.

It's easy to be overwhelmed right after the Dx. We all were. Take a deep breath and take it one day it a time. It's all you can do.

Susan

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Lisa-

Welcome from another Ohioan!!! Sorry you find the need to be here but am glad you did find us.

I agree, stats are stupid. I was told 12 months tops and in a week and a half it will be 34 months for me!! So don't let that get you down - the docs really don't know.

Glad you are getting a second opinion - my first onc was very big on that -actually encouraged his patients to do that. Said then if you came back to him, you were 100% sure you wanted him as your doc!!

As far as supplements go, please check with your doc before he takes anything. I remember early on, a friend gave me some super-duper vitamins and the doc actually said NO - they might have grapefruit in them. Something that innocent!!!

Please keep us posted as to how both you and your dad are doing. Your dad sure is lucky to have you by his side.

Hugs - Patti B.

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Lisa, I'm coming in a day late but wanted to welcome you. You've already gotten some great advice, and I agree with Pattie, your Dad is lucky to have you in his corner. Good negotiating skills in letting your MIL come around to considering the second opinion herself without alienating her by insisting. Hope she and your Dad go through with it. Hang in there. You've already seen you have a while second family here ready to offer support.

Judy in Key West

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Lisa - sorry for the late welcome. I am so sorry for your dad's recent diagnosis. He certainly sounds like a fighter!

It is so much to absorb in such a short period of time and it sounds as though you are all working well together under a huge amount of stress.

You will find a great deal of experience, hope and love from this "family" - I am so sorry you had to be here, but very glad you found us.

Please keep us posted.

Linda

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Hi Lisa. I am so sorry to read about your dad. He has already been through so much. It seems to me that quality of life is very important at this time. And I think he does need to be told that he has lung cancer so he can properly participate in decision making. You have come to a wonderful place full of support of people that have walked in your shoes. Please keep us posted on how your dad is doing.

Sandra

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