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Carleen

Hello All

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Hi everyone. I've been reading your message board now for about two weeks, and finally felt like I needed to get in on some of this positive spirit and support I've been reading in other postings. My husband (age 31) was dx with small cell lung cancer on 3/19/03 (same night as the start of the war in Iraq, not a real good day all around) :cry: . In the past three weeks, we've gotten second and third opinions, visited the Mayo Clinic for another opinion and treatment options. The Mayo Clinic changed the diagnosis a bit, to a level III Atypical Carcinoma. Not quite sure what that means verses SCLC. We've been given so little information from the doctors, no idea of prognosis, or expectations. I think that is one of the scariest things. There is the fear of Cancer, added to the fear of the unknown.

My husband starts Chemo on Friday (don't know what type), and will continue once a week for the next 6-7 weeks.

I just can't control the feelings of desperation, anguish, grief, fear, and anger. I can't function, I can't do anything but cry all the time. What's worse is I'm sure my husband suffers these feelings too, and I feel helpless to alleviate his pain. I want to act strong and positive, I want him to be positive and fight hard to beat this, but internally I feel like my heart is breaking and betraying me with a feeling that I am going to lose the only person that I'll ever love.

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Carleen, you have come to the right place and we're glad you decided to "get in on the action and support". Sorry about your husband, and so young. You are going through what is "normal" for a cancer patient caregiver, and I'm sure your husband is going through what is "normal" for the patient. Sounds like you are off to a good start, with your checking opinions. And now, at least, you are about to start treatment. Sometimes the worse time is the waiting in between diagnosis and treatment initation. I strongly recommend that you and your husband get good friends or church counselors or someone you feel trust in, to help you through these days. My wife and I both have such people working with each of us. Feel free to ask questions (no dumb ones, only the ones unasked are dumb) and to vent your feelings. No one should travel this road alone. God's blessings to you two. Don

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Carleen,

First of all, ask the drs. many questions. They HAVE to answer questions; it's the law. Ask what kind of LC (tho, it sounds like the drs are confused too). What Stage. What treatment options. If chemo which one(s). Take a tape recorder and record everything.

Questions for you: How did they determine what kind of LC your husband has? Did they do a biopsy? What kinds of xrays did they take? CT? PET? MRI?

This is a difficult enough time for you and your husband. You certainly do not need to be kept in the dark!

Don't research the web, it will just depress you. Come to this site to get the REAL answers. Someone here has probably had (or has) what your husband has. Here you will find hope, support, answers and plenty of love.

Please keep us up-to-date. We will respond.

Sending positive vibes to you and your husband>>>>>>>>>>>>>>>>>>>>>>>>>>

JudyB

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Welcome Carleen,

I think you might both start to feel better once treatment is started and you feel like something is being done. I know I did. You can only take one day at a time. Take a notepad and write down your questions and the answers that you get. There is a lot to absorb all at once. The people in this group seem to find all the right things to say and there is much comfort here.

Jenny

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Guest hopeful2

Jenny is right. Write down all questions for the doctor. And try to write down what he tells you because many times under all the stress you forget about 1/2 of what you are told. Who did the testing for cell type? Mayo or both? I would ask to see all biopsy reports, or better yet ask for copies of all reports.

Remember we are all in this thing together. And as was said, "There are NO dumb questions."

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Guest Tim'sKathy

Carleen-

Judy is right !! DO NOT SEARCH THE WEB !!! It is all doom and gloom and out of date statistics ! You figure if they are giving you 5 year survival rates, then the people had to have been diagnosed at the latest, in 1997- a lot has changed with treatments since then !

I am going through the same feelings as you...my husband Tim, 54, was diagnosed with Stage IIIB NSCLC the day after Christmas (nice present, huh?)...and I have gone through all the emotions you are having. I finally let my doc put me on an anti-depressant and an anti-anxiety medication and even though I resisted at first, I am so glad I gave in because it has made all the difference. At least now, I am not falling apart all the time.

This is a great place...there is hope and caring here. Never give up...because as someone else has told me, there is a survivor for every type and stage cancer out there....

We'll be praying for you and your husband !

Kathy

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Carleen,

Welcome to a place of much caring and solice. This is a safe site to ask questions, vent, praise, encourage, cry virtually, etc. I'm glad you have conferred with more than one doctor and institution...it is just a LOT to absorb all at once. I was in a total fog for about 2 months and wish I had been connected here. Remember the tape recorder, notepad with questions, and please be sure to request a copy of ALL scan reports, path reports, AND each doctor's Chart Notes after a visit (I wait a couple of days for them to be transcribed, then I go pick up my copy...the doctors will usually look them over first to see if they have written anything they feel needs additional explanation, but it is your RIGHT to see them and have copies). Start a 3-ring binder for all of this information. It's a good idea to have a section for bills, insurance, etc., as you never know when you might need this info down the road. Someone on the board even has copies (or maybe the originals????) of all their scans. When I have needed scans all gathered together (i.e., second opinion at another hospital), I have just run around and collected them. I'll be praying for your young family. Blessings.

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Carleen,

I agree with everything everyone else said...Ask questions, take notes, demand answers....

And don't believe what you read on the web! The statistics and the odds don't factor in the human spirit and the fact each person is different!

It will get better. The first few weeks are lost in a blur of pain, anxiety and confusion. You will level out....and you can feel a little bit in control when you start into a routine of treatments, doctor visits etc.

Come back here often...we KNOW what you are going through. Other's may think they are being helpful but too many times, they are either way off the mark in their remarks or they are too negative.

They say misery loves company - but I believe SURVIVORS are warriors and warriors are an army. And you know how people who are walking the same path can become close? This is one of the best groups of people I have ever met. You will sometimes get information, sometimes advice, but you will always get ENCOURAGEMENT.

Love and hugs,

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Hi Carleen.

Don't try to think about what COULD

happen down the road; the road you and your husband have begun your latest journey on is a cloudy, rainy, dismal, rough, bumpy road, full of large and small potholes, lots of curving, winding changes in direction, and many hills to climb. The thing is, that around the VERY

NEXT curve, or over the top of the VERY NEXT hill may be sunshine and a straight, level, or slightly downhill (good for coasting with no worries) section of road that runs through beautiful fields and meadows of flowers. If you concentrate on all the steep hills, curves and clouds that you MIGHT encounter down this road --- YOU'LL GO NUTS!!!

Carleen, my steep hills and cloudy days turned into a straight and level road through meadows of flowers 26 years ago. And now I go LOOKING for steep hills to climb!!(mostly on my bicycle now) The other thing is that everyone, including the doctors, thought my number was up way back when - I was the only guy who knew for a fact that my ticket wasn't going to get punched anytime soon. This can be the same for anyone. Just have to read all the stories on this board.

So listen to all the right-on advice you've been getting here, stay positive, and keep in touch.

David P.

Judy and Tiny, and everyone else out there with so much needed advice on how newbies, and newbie caregivers can successfully deal with doctors, clinics, reports, and the like; could we consolidate all that stuff in point form and maybe post it somewhere a new-to-the-board

person could be directed to view it? Perhaps a dedicated forum? It seems that the same advice is always going out to new people in various bits and pieces, but seeing so many great points all together in Judy and Tiny's and other's replies started me thinking it could all be put in one post. We could then say, " Howdy, sorry you had to... and by the way, make sure you go to the_____ forum

and read the post on how to deal with doctors, etc." I would do it, but I have been so far removed from the nitty gritty of all this cancer stuff for so long, I feel I wouldn't do it justice. What do you all think?

David P.

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Hello Carleen,

Welcome. I am so very sorry to hear that your husband has Lung Cancer. :( I will never forget the way I felt when my Mom was diagnosed. My heart goes out to you. Try not to think "the worst or what ifs".. lung cancer is terrible, but it is survivable and there are many here to tell you that its not all doom and gloom. Hang in there! With hope, faith, love, support and good medical care you will get through this! Keep the faith and feel free to vent and express your concerns, fears and whatever else you are feeling.. you are not alone.

Laurie

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Hi Carleen,

I am so very sorry to hear your story. My husband (age 59) was diagnosed with SCLC right before Christmas. Its not an easy road to travel, I can't tell you it is. You will find a great deal of support here, finding this board was a life saver for me. Even though everyone has said it to you, I want to say it again - they are right DO NOT do research online. I did that at first, and the only good thing that came out of it was I finally found this support group. Before that all I found was horrible stories that told me my husband wouldn't live. You will cry, you will be angry, you will be worried, but you will also feel hope, because they do wonderful things with cancer now and it will bring you and your husband even closer than you already are. I don't know why it does, but it did for Hugh and I and almost everyone I talk with who have gone through cancer say the same. Come here often, talk with people, depend on people. Take care of yourself as well. Lots of prayers headed your way!

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David,

The "Newbie" Forum sounds like a good idea to me. I don't have a clue how to go about it or if there is genuinely enough interest and need. What do others think????

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Thank you everyone for all the advice and support. Just reading about all of your experiences and seeing your optimism and confidence has helped me. I am trying to go on with normal activity and maintain a positive attitude, but the wound is still a little fresh and I struggle.

The more I read, the more I realize I know so little, and am floundering aimlessly through this. I haven't asked too many questions, but I guess that is my own fault because I haven't been able to think of the questions at the time I am in the office. I know so little of what to expect, what is going on, that I don't know what the important questions are. The only question I can think of is "how can we cure this". I need to get organized and focused.

I truly think that a forum for 'newbies' would be a good idea. I think that if others feel like I feel upon first hearing this news, then they too must be wandering aimlessly, confused and scared. There is so much knowledge, experience, and support here, newbies just need a place to begin. That was one of the only difficulties I had coming to this site, With so many forums, I just floated around with no direction and no idea where to start.

Thanks again for all the thoughts and prayers for my husband and myself, please continue to include us in your prayers. I am including all my new found friends in my prayer schedule, which at a prayer every 15-20 minutes I can't help but be heard.

Carleen

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Hi Carleen, glad you decided to join this forum. Here you will find a great group of positive survivors who are rooting for you and your husband with all their might. When you first heard this diagnosis, you and your husband were devistated and stunned. Now, put that in a box to the side. Take out the next box marked "cure" open it and out will come ALOT of questions, ups and downs, highs and lows and TONS OF HOPE. Many people do succeed in beating this. I agree that reading the stats is not the way to go. They serve no purpose except to depress you. What you need right now is UP THoughts! 1. Your husband is very young which is a very positive thing in fighting this. 2. You can go into battle armed with questions if you write them down ahead of time and go to the appointments prepared. 3. You can be aware that everyone seems to experience side effects differently; some people do extremely well with Chemo and manage well. The anti-nausea drung Zofran worked wonders for me. When I had chemo, it was important to drink alot of water which the nurses monitored all the time. I had radiation as well. My regime was 3 weeks (Mon-Fri) of twice a day radiation which began last April. The second week of April i began the chemo of Cisplatin and Etopisde(?) for three days straight and four rounds, ending in June of 2002. My doctor was treating this very aggressively and apparently it worked. I am currently waiting for results of a CAT scan I had yesterday. I feel good, although I am nervous. I am only 49 and, again the doctors feel my age helped my situation. Please feel free to express your feelings on this board - that's what we are here for. Also, by thinking positvely, that vibe will rub off on your husband and he will be up, too. Please smile for us.:)

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Hi Carleen,

My husband is 35 and was dx with IIIB adenocarcinoma in Jan. I know how hard this can be and how scary to think of losing your husband especially when you are so young. I am 32. I encourage you to try to stay on the hopeful side of things. You don't know the future and I believe that it is better to spend this time in hope as much as you can versus despair. This is a good place to vent feelings and find people to talk to when you can't talk to your husband. I am thinking of you and your husband and hoping good things.

Sara K

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Hi all. Carleen, I hope some things are being put into a little more perspective for you now, but before you go to your husband's next doctors appointment prepared to ask all the right questions, and record all the answers, you need to know what exactly are the MUST ASK questions.

This is where I see a new forum would be useful. It shouldn't get confused with the "welcome/introduce yourself" one, and it would be more pointed and directed than "hospital hints". I see something like "Newcomers Information Forum" - more of a "getting started" or "how to" type thing for someone who already has too much to think about to attempt to ask meaningful questions, and come away with answers in a manner that they can be talked about at a later date.

-- A list of MUST ASK questions for doctors, nurses, clinics, etc. that could be printed off and taken to the appointment.

-- A list os strategies used to help deal with all the new and yet unencountered situations that WE ALL know WILL arise for this new person; such as dealing with family members and friends, and how to ask for and receive help, or how to put things into perspective so as not to be too overwhelmed.(Joanie's putting one box away, and taking out a new box is a good one).

-- How to orchestrate second opinions, ask for and collect lab and test results data,and keep those records for future use (hopefully you don't need them, but as we have seen recently, the results may by required months,or even years later)

It certainly would have helped me way back when. I'm constantly AMAZED at the amount of information you all deal with these days.Just some ideas. Bye for now,

David P.

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Gee, David P, Everytime I see that pix of you on your bicycle, I feel like I should slap myself and go quickly to a fitness center, instead of being the slug that I am. And, Tiny! A new photo of you doing ANOTHER strenuous activity! What's a couch potato to do? (Please don't tell me to change. It hurts to think about exercise :lol: )

JudyB

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Not much to add except to say I remember being where you are now. I thought I would never stop crying. We were fortunate that a co-worker of my husbands that had had cancer came by with all these books and tapes about cancer. Most were incredibly helpful. One of the things in the bag was a set of tapes of Bernie Siegels books. We would play them on the way to treatment and whenever we were in the car going somewhere. They were so calming, they were the only thing that helped during those first crazy weeks. I reccomed them as he gives practical advice on beating cancer as well as inspiration.

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I think the R.A. Bloch Cancer Foundation site is a great place for someone newly diagnosed. They stress the importance of quick action, competent treatment, 2nd opinions, knowledge, a positive attitude, hope, and support systems. Then sign up here, you'll be in good hands.

Jenny

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Carleen, Sorry I'm a bit late-but welcome to the message board. You've gotten some great advice here. Just to let you know. when my dad was DX with NSCLC in Jan 2002, I, too, had a difficult time thinking when in the presance of the doctors and would only be able to think of questions AFTER the visit. SO, I wrote down my questions, called Dads oncologist and requested/demanded to speak to him so that I could get answers. I always began by thanking the Dr. for taking the time to speak with me on the phone, and that he must excuse me if some of my questions seem dumb, but I don't have a medical degree, and that this is the only Dad I have-and I am determined to understand as much as I can. He was always great about it. And it is VERY TRUE...THERE IS NO SUCH THING AS A STUPID QUESTION!!!!! Go with your gut, if something is bothering you about how you are being treated at any time by the medical staff-speak up. Consider them YOUR STAFF-YOURS AND YOUR HUSBANDS EMPLOYEES...and you CAN FIRE THEM (kinda gives you a power trip, huh? :twisted: GOOD.

Now, also be warned that this is your safe haven. The rules are simple:

1. there is no reason to apologize for "rambeling", as there is no such thing here. Make your posts as long as you like. Just get all that you want to say, or ask, out of your system. It is a great stress reliever.

2. never apologize for having a bad day, come here and VENT...VENT...VENT... It is a great stress reliever.

3. If something strikes you as funny, laugh. You may find yourself making "light" of a difficult situation, it is normal, and even needed. My sister and I make jokes all the time about our situation with our parents (dad Lung cancer/ Mom, ovarian cancer).. No one else gets it, but the people here DO. So, laugh. It is a great stress reliever.

4. No question, or piece of advice is dumb. Even if you just want to let someone know that you're sending positive thoughts, or whatever. Sometimes I find that, even though there are times I can't even boost my own spirits, when I come here and offer support, I feel useful again. It is a great stress reliever.

5. You're among friends here. Strike that, make it FAMILY!!! And THAT IS A GREAT STRESS RELIEVER!!

Well, thats it. Take care, Deb

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Carleen

Welcome Can't say much that hasn't already been said! But you did & have come to the right placae for the most loving family!!!

Hang in there! It will get easier!

Love Estelle

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Carleen,

Sorry I'm late....welcome. Just want you to know there are survivors out there.My Dad was dx w/SCLC at age 53....and that was in 1983!He is currently getting chemo now because he was just diagnosed with it again :( .Oh,by the way his disease was extensive....God bless

Lynn

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Guest canuckwebgrrl

Carleen,

I'm sorry I took so long to post a welcome to you. My step-father has SCLC, his info is in my signature. There are so many supportive people on this board, they've made me feel welcome and don't think any of my questions are dumb.

Chris

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