I would like to ask a question....

there seem to be many stories of Stage IV lung cancer patients living far beyond what the drs first diagnose. I know there have been many advances in cancer treatments. In a lot of these stories they were told that they only had 6 months but somehow through chemo and radiation they have made it to 2 years or more.

My question is...how functional were they/you to begin with? I have read many stage IV people say they are functioning and living life/doing normal tings the only differencs is they get more tired and have to rest more...
Did all of these long term survivors start this way? or are there some that already showed many physical signs? I would like tobe hopeful about my husband time left but I feel like I need to be realistic as well.
He was just diagnosed last month. Has had 6 radiation treatments only to shrink one of the tumors that apparently is blocking an airway so they can do pleurodesis and remove a portable chest tube he has had in for 3-4 weeks. They are not even going to START chemo until this is done which could be another 2-3 weeks. Someone told me it could be because he is pretty sick and his body probably couldnt take radiation AND chemo right now.

I would have to say he really isnt functioning much right now. He cant do anything but sit up sometimes for 20-30 min then he has to lie back down. It is all I can do to get him to radiation. Infact... he missed the last 4 appts...he should have been done..they were only doing 10...but now he has to finish them this week. He hasnt felt well at all. Either pain at the sight of the chest tube...or nausea ( I got him a prescription for that yesterday)...he hardly eats... maybe once a day and partial if i am lucky... I think one hamburger yesterday... 1 taquito and a couple of chips today....
The dr told me that it is terminal and that she thinks this will go quickly...6 months. Many would say not to believe the statistics...I understand that..but wouldnt a dr know where a patient is at as far as health goes?
It seems to me where he is at is not good. There has to be a point of no return....how do you know when you have reached it?

But going back...my main question...were any of you or people you cared for who survived a lot longer than the Dr said sick and showing major symptoms already at time of dx?

I am having a hard time b/c the drs and my husband seem to have no sense of urgency...I dont feel like everything is being done that can be done and wonder if all if being done that SHOULD be...if you know what I mean.
I dont want to live the rest of my live with regrets and "shoulda woulda coulda"

how do you know when all that is being done is being done?

I am also concerned b/c he has missed 4 radiations in a row... plus they dont radiate on the weekend... how much of the good the radiation could have done may have been reversed..etc etc...during the past 6 days...

Sorry for the long post... just something I would like to get a grasp of...

Thanks

hi snoopy-

Your situation is very similar to my own, so my heart sincerely goes out to you. I understand what your feeling and thinking. Back in July 06, my wife was diagnosed stage 4 nsclc after discovering she had a colapsed lung due to an obstructive tumor. It was later determined it had spread to the liver and bone. We were shocked and devastated as she was previously in good health and never smoked ...and only 43. I will never forget when the onc sat on the end of her hospital bed and told us that her condition was non-curable.

My wife was hospitalized 3 times in 6 weeks for about a week each visit because she could not get rid of the post obstructive pnuemomia which was behind the tumor blocking the main airway. The oncs never really gave us a timetable, but she was obviously on the fence. People kept dropping hints on me to prepare for the worst. On the third hospitalization I noticed we were just going in circles so I called a meeting with the oncs and demanded that we do something that would give her a chance, so 2 days later she started chemo. They were wanting to wait til the pnuemonia cleared, but that wasn't happening. However, 2 weeks after her first chemo treatment the pnuemonia cleared and we have been battling since. To give you and idea of how she is doing, I had to stop in the middle of writing this to help her get groceries in. That was the first time she has went out by herself and did that much shopping since she was diagnosed.

To give you a brief history of her treatement ....she recieved 10 radiation treatments, 6-7 cycles of chemo (carboplatin/gemcitabine) and is now on Tarceva, a tablet taken once a day that specifically targets cancer cells to prevent further progression. It seems to be working and in turn she is slowly rehabilitaing her physical strengths. Back in August, she could hardly get out of bed ....so I believe there is always hope. The oncs will offer the best educated guess based on the husbands stage and performance status, combined with any other health concerns. Oncs are sometimes the object of criticism and ill feeling because they don't appear concerned enough and don't project the hope we so desperately desire. But it is not their job to give us hope, they are basically scientists. While we greatly rely them for consultation and treatment, we must bridge the gap by doing all we can to encourage, inspire and care for our spouses.

I am out of time for now, but I hope I have in some way been helpful. No one can know for certian what tommorow holds, so we just take each day as it comes and keep striving towards living as much a "normal" life as possible.

conan

Hold on to your faith in life, my father-in-law was given 6 months tops. Only treatment he has had is one blast of radiothearpy to help symptoms. 6 months has been and gone and he is still with us, no pain just very sleepy and a cough with some blood. He is able to enjoy seeing his family eats well. He has no idea that he has lung cancer so he doesn't worry about it. maybe its mind over matter. I wish you well please look for the possive things and enjoy the good days.

Hi Snoop- I am a "young" 56 year old. I have been living with stage IV NSCLC since being diagnosed with such in September 2005. Have gone through radiation, surgery, and now on my second line of chemo.

Prior to this illness I was an avid marathon runner and very fit. It is my conditioning that has helped keep me alive today. It is my fitness that enabled me to submit to a very toxic chemotherapy and prolonged life.

I have great faith in my thoracic oncologist. We have had frank discussions regarding prognosis. Yet, I have never been informed of any amount of 'time left'. I have been told "It is not time for that kind of discussion". I believe him. I am also aware of the survival statistics for this staging etc... I'm a realist.

Since September 2005 my health has steadily but slowly been declining. I continue to work daily. I continue to enjoy family, friends and an active social life. However, my lack of energy prohibits me from participating in most physical activities. I become tired just sitting up. I rest, lying down, at any chance I get. I try to maintain an appetite. I keep my mind stimulated by reading, conversing, and watching TV. I do the best I can.

Has this been helpful? I wish you and your family the best. Keep in touch.
Tom

Thank you all for responding.
Conan..yes it sounds very similar..how great she could do something "normal" like shopping. It must have been good for you too see that. I think we take all these type of things for granted and even complain about them until they are taken away... I would love to see my husband mow the yard or any of the normal things he used to do... I know he would love it too...

Tadalaja..I wish you the best with your FIL....I do think your mind has a lot to do with it..

easy..... as unfortunate as all of this is I sure it was very fortunate that you were very strong and health before....I am sure it must be difficult to not be able to do everything you used to be able to do....but that is great you can still work and still do a lot of everyday things...my husband is 47 and was a pretty big and strong guy..I had people tell me that might have made things worse because his body probably tolerated all of this till it had really progressed too far...if he had been weaker or older..it might have been caught sooner just b/c of the tolerance factor... he has lost over 40lbs but he had 40 or more to lose...

things are not going in a good direction for my husband... he has now missed 6 "opportunities" for radiation and the radiologist said if it is that hard on him they should probably just stop and start paperwork for hospice care...he spoke with the oncologist and she was in agreement.. They basically said if he wants to continue treatment they wouldnt deny him but it would be up to him. They said that it seems like the cancer is progressing as expected....
they would at this point just try and keep him comfortable...

I am frustrated b/c I dont know how much of this for him is physical and how much is mental. I certainly dont deny he is not feeling well however...these rad appts are so short..i feel if he really wanted to do this he would make the effort to go there... i feel he is/has given up and he just doesnt want to tell me. I am dreading this but I need to have a conversation with him about his "goals"...i.e... if he really wants to do what he can..then he cant take this "no urgency" attitude and let him know the drs have basically put it all in his hands and that if he doesnt do anything at all than there prob wont be a lot of time... but if he is done and doesnt want to fight...then I need to know that to start "preparing" and stop thinking he wants to try....

Attitude is everything with this disease...I truly see that... it may not get you a cure but it will certainly work a few miracles.... but it is not looking like those miracles are in the cards for us. I feel totally helpless but I know there is not much more that I can do....

Thanks again everyone....

Keep faith miracles do happen, my FIL was not in good health when he was diagonsed, he has blood cancer, skin cancer, had several strokes, and a couple of heart attacks, not to mention heart failure high blood pressure, diabetic etc. when his lung cancer was found it was 7cm advanced and untreatable and as i mentioned B4 he has had no treatment other than 1 radiation treatment. We were told 3-6 months with the lung cancer but he would probably go B4 that with one of the other illnesses but he is still with us and able to enjoy seeing his family. We take him out in the car for a ride when he is upto it. We have found having something to look 4ward to gives him that extra zap and get up and go. He has no idea that he has cancer or that he is going to die he has short term memory loss and often is in the past but if we have promised to take him out or do something with him he doesn't forget that. Maybe you should plan to go on a short break or do something really nice take both your minds off the cancer for a day or two. My heart goes out to you both as this vile illness affects the whole family. keep you in my prayers.
Theresa

Keep faith miracles do happen, my FIL was not in good health when he was diagonsed, he has blood cancer, skin cancer, had several strokes, and a couple of heart attacks, not to mention heart failure high blood pressure, diabetic etc. when his lung cancer was found it was 7cm advanced and untreatable and as i mentioned B4 he has had no treatment other than 1 radiation treatment. We were told 3-6 months with the lung cancer but he would probably go B4 that with one of the other illnesses but he is still with us and able to enjoy seeing his family. We take him out in the car for a ride when he is upto it. We have found having something to look 4ward to gives him that extra zap and get up and go. He has no idea that he has cancer or that he is going to die he has short term memory loss and often is in the past but if we have promised to take him out or do something with him he doesn't forget that. Maybe you should plan to go on a short break or do something really nice take both your minds off the cancer for a day or two. My heart goes out to you both as this vile illness affects the whole family. keep you in my prayers.
Theresa

My prayers are with you and you husband, ask the Lord for WISDOM, STRENGTH, an GUIDANCE! thats what I ask for every morning when i wake up. I recently had a PET scan and was told I had a 3.5 cm tumor in the right lung, a 1.5 cm tumor on the adrenal gland, a lesion on the liver, and 2 lymph nodes also may contain tumors, I have a biopsy on Friday 4/27...Expect the worse and hope for the best like Conan says! Attitute plays a really big part you are right...I'm preparing for a battle with full force.

I will pray for you and your family,

Mari