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Another newbie...


Ellen in PA

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Hi folks. I've been lurking for about a week and figure it's time to declare myself. I started getting short of breath when walking my dog back in July '07. Went to cardiologist, who sent me for stress test -- I passed with no problem. Fast forward to Thanksgiving night, '07 -- I'm walking my dog and am winded (as usual) but there was no stoop to sit on (which I'd gotten in the habit of doing) and so keep going -- and passed out. Wake up on the sidewalk with a gash in my forehead and some nice stranger drives me and the doggie home. Husband insists on Emergency Room (my face was covered with blood) so we call 911 and get taken to Jefferson Hosp., a (supposedly) excellent Philadelphia hospital. They insist on admitting me to find out why I passed out and keep me for 3 days doing all kinds of tests and discharge me with a dx of 'pulmonary hypertension' and tell me to see my cardiologist. I make an appt with a new cardiologist for December 26. Pass out a week later in the street but no wounds this time. Show up for cardiologist appt and tell her the story. She sends me for an immediate chest CT-scan. While I'm getting dressed after the scan, the radiologist calls her and tells her I've got pulmonary embolisms and tons of clots and probably lung cancer. She tells him to have me wheeled to Admissions. (Her office is in HUP, another top Philadelphia hospital.) I stay there for 2.5 weeks while they confirm the dx. I'm told to expect to live about 8 months and advised to go home and 'get [my] affairs in order'. And, except for the two fainting episodes, I have NO symptoms -- no pain, no cough, clear chest.

Well, it's now March and I'm on Lovenox for the clots (was on Hepparin in the hospital) and feel absolutely fine. The oncologist has suggested several chemo regimens and the one she thinks I'd do best with is Carboplatin (or maybe Cisplatin?) and Alimta. But I'm real reluctant to make myself feel lousy in the short time I have left feeling good.

Suggestions/advice gratefully accepted. TIA.

Ellen

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Hi Ellen: chemo is pretty much doable these days since they monitor it closely and have drugs for anti nausea. It may add years to your life instead of months. You would feel crappy from time to time and after 6 rounds or so, usually spaced 3 weeks apart, you may be able to go off for a while and have significant shrinkage of tumor. It is possible and others have done it. The docs may be just quoting average statistics at you.

Don m

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Hi, Ellen, welcome to the group...but don't get me started on statistics! They're just historical averages (actually medians) of a large number of patients with a similar diagnosis, and have no direct relevance to you, or me, or any individual. I have adenocarcinoma stage IIIB, which supposedly has a survival outlook rather close to stage IV, it's now been 18 months since my diagnosis (that's when the clock begins), and I'm feeling better than I have in almost 2 years. Back in late summer 2006 my pulmonologist and thoracic surgeon both used identical words -- "it doesn't look very good" (they must teach that line in medical school) -- though to their credit they didn't offer me any prognosis statistics and I didn't ask for any. My oncologist was wonderful -- he let me take the lead in our first meeting, I told him I wanted the best available treatment for my condition, but that at my age I valued quality of life over longevity. He put his hands on my shoulders and looked me straight in the eye and said "Ned, quality of life, that's our goal."

Now back to your situation. I would wager that IF, in July 2007, the ER crew had sent you for a chest CT scan, much of what showed up this winter would have showed up then. If that's the case, there's a good possibility you would have been designated stage IV at that time, somebody would have looked in his median survival tables and said "adenocarcinoma stage IV, 8 months" and you would have made a mental note "expiration date March 2008." Remember, the countdown for this stupid exercise starts at diagnosis, whenever that occurs. So please forget this 8 months stuff.

Thanks, I needed that. The only other point I would make is to echo what Don said, that you shouldn't assume chemo will wipe you out. Your oncology team might choose to radiate your mets at the same time you're getting systemic chemo, and yes you'll have some fatigue, but possibly not much else. I've been on some form of chemo or targeted therapy continuously since October 2006, I've never been nauseous, I've had no days laid up in bed (an occasional afternoon nap doesn't count), and I've always been able to function though with a few limitations from time to time. Read through some of our profiles and don't count yourself out just yet. In a worst case scenario, if you do have poor tolerence to chemo and/or radiation and your quality of life begins to really suffer, you can always stop then. My advice? Go for it!

Aloha,

Ned

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Hello Ellen and welcome

I am not going to repeat what has already been said here except to say that statistics are NOT law. Stats are merely numbers whereas you are a unique individual.

Nobody can predict how you will or will not react to any type of chemo but many here on this site can tell you that their lives have been extended by years from having treated their cancer.

Please keep posting, ask any questions, voice any concerns and know that there are many wonderful people here who are more than willing to jump in with answers and advice as well as support and hope!

Warmly

Christine

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Hi Ellen-

My husband and I had the "get your affairs in order" talk also. He was given about 4 months but started treatment immediately and lived over 5 more years. There are many drugs that are not that harsh and some that are oral. Avastin is a very quick infusion with minimal side effects. I think you should revisit the treatment issue-- your cancer may respond well.

Let us know how things go.

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Welcome Ellen, sorry you have had reason to find us. Can't really add to anything said above, I particularly like Ned's points about the time frame. You'll learn quickly here that no one believes them on this site.

You just missed the PA luncheon in King of Prussia on Saturday, hopefully we'll see you at the next one we do.

Until then, whatever path you choose for treatment, best of luck.

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Welcome Ellen. I don't have anything to add to what others have said, either. I do want to encourage you to give chemo a try. You can always quit, but it really isn't all that bad. Treatment has the potential to extend your life considerably. Best wishes for whatever you choose. Do keep in touch.

Muriel

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Hi Ellen -

Sorry you needed to find us but this forum is a great place to be for information, strenght and friendship.

I was told 18 months ago that I probably wouldn't last 12 months - and I am still doing most everyhting I did before, albeit a little slower.

Have you considered another opinion ?? I hate to see someone not take the option of chemo based on a doctor using outdated stats. Chemo could really help you.

Please feel free to ask any questions, PM me if you need someone to talk to. And most importantly, don't give up - fight like hell!!

Hugs - Patti B

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I just want to echo what the others have said - I too was given less than a year and it has been almost 15 months and I am still living my life as actively as before diagnosis. Don't believe statistics! Be positive, stay strong - my prayers are with you

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Hi Ellen and welcome here. So sorry you had to find us but you have found the most caring, supportive and knowledgeable support family on here.

I am so sorry for all you went through. They should have found this out sooner when you first went to emergency. They could have given you the chest, CT then.

Stasticts means NOTHING around here. So many on here have been told the same as you months, and its been years and they ar still here.

If you have any questions, please ask away. There is always people who can give you answers.

Please know that we are always here for you 24/7

I am a Philly girl also, born and raised in NE, now I live in Voorhees right across from Cherry Hill.

Where in Philly are you from?

We just had a nice luncheon (our first) for locals (of course anyone is welcome to come) in King of Prussia. We hope you will make the next one. We would love to get to know you.

Take care and keep a positive attitude as that is half the battle.

We are in your corner and we will fight along with you.

Maryanne

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hey there. I agree with everyone else here. Very early on a nurse told me not to ask for what I did not want to hear or believe. I told my doctor I did not want to hear any statistics. So, you have heard them once, tell your doctor the same. Chemo ain't great...but it ain't so bad either. And you will find care at cancer clinic absolutely phenomenal and be inspired by other patients. Never give up.

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Ellen well those that have posted ahead of me have already said it ALL!!! Welcome to the board and now get ready to fight ... I had chemo and radiation on inoperable lung cancer and though not a walk in the park it was very very doable. I have searched my body (do not want to know what is in the places I can not see) and have found no tags or stamps with an expiration date. Only one knows when I will be called home and he is not telling anyone else. Keep us informed of what you decide to do.

Judy

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Hi Ellen-- Before you go into funeral mode you might want to do more research and get a second opinion. The statistics are what they are so with that said it does not mean anything as far as each individual. As you can see by my profile I'm still here and 2 months away from 6 years at Stage IV. I did 4 years of chemo and it payed off big time and have not had chemo for 15 months. Had very few side effects (active life) and they have come a long way in treatments and medications to off set side effects. It's all about taking it one step/one day a time, staying positive and attitude on how one looks at things. It is overall very doable. Stay with us and let us know how things go. Hope this helps and prayers for the best.

Rich

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