When to go to Hospice care or "give up" treatments

I started Tarceva 2 weeks ago and waiting to see if it works. My dr. seems to think that this is the last thing to try and then just go on pain medication. At first I thought ok he knows best then I started to think (beside the side effects of the drugs) I feel pretty good and up and around. 2 ways to think about it
1. enjoy life without side effects from the drugs that help
2. try another chemo (I have had 3 rounds of chemo) after the Tarceva (just a feeling its not working)
round one was Carbo-alimta-avastin-worked great for 1 year. round 2 was Taxotere. great results but after 5 months the side effects-neopathy, fluid around lung and tiredness got to me so took break for 5 months then started round 3 with Taxotere again. This time not so good as 1st time with drug. now the Tarceva (don't know if I have markers wasn't enough tissue to test without going in and getting more.
I know i'm jumping ahead but its hard not to think about it. Any thoughts from you all would be kind. thanks

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Live each day in the moment! You don't even know if this has worked or not and there's always clinical trials. It's your choice and no one else can tell you when it's your time as only you will know when you've had enough. If you're feeling good then just take it day by day, we can't predict the future or how long we'll be on this earth. Take care, Judy

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This is such a difficult and personal thing to decide, Of course we have all heard the stories of people going into hospice and having 2-5 years with great quality of life. I guess (and I am working this out for myself as I go) that there will come a time in the course of this disease that the law of diminishing returns will be put into play. If the treatment causes me to be sicker for a longer period of time than it gives me healthful days, then I will seek hospice. I will include clinical trials in the course of seeking treatment. I would definitely require a second opinion that there would be no additional course of treatment before signing up for hospice.

Thank you for asking this today. I don't know if my answer helps you, but it gave me cause to think it through.

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It helped a lot. Thank you! I heard the houston hospital anderson (i think) was the best for cancer and lung cancer. How far would you travel with a stage IV? Its a lot to put on my family and I guess I don't want to be desperate looking. (which we all are). I could see this hunting for living longer getting out of hand. Oh, well I am a worrier and planner. I retiered from being a school librarian- well organized and planning to trying to live one moment at a time. Hard

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If it were me, I would get another opinion from a top notch cancer center or oncologist.
My friend's first oncologist basically told her to plan her funeral. Then she went to mine and is doing great 8 months later. She also had stage IV.
Hospice would be ordered if your doctor gives you a prognosis of 6 months or less and no further treatments. Hospice is great when needed.

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You seem to live in central Cal, pretty equidistant to either the Bay Area or Los Angeles. You should be able to go see a doctor with an NCI designated cancer center in either of those places and you should be able to do a day trip or quick overnight.

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A man I know went there to participate in a clinical trial for his brain cancer. He enrolled there and was sent home to Ypsilanti MI with a thick notebooks worth of instructions and paper for the oncologists here at St. Joes to administer the treatment. Flights for him and his wife were donated by a corporate jet. He is doing amazingly well, he and his wife spent last summer touring the US on motorcycles and are preparing for more trips. They are 62 yrs young. So I guess I would travel across the country for treatment.

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I would second the opinion of fhoneymom. If you haven't yet done so, I would highly recommend a visit to Stanford. Based on our experiences there I think you could have a very frank and useful discussion about your options. It's quite easy to access. UC San Francisco is also top notch.

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My mom is facing the same decision. She is trying Alimta after progression to her brain and supraclavical lymph node. She is having a terrible time-this week she has pneumonia. I'm not sure what is next but she was feeling fine prior to the Alimta! Ugh. Good luck with your decision.

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I love the idea of a second opinion. I don't know why I didn't see that. When I was first diagnosed 2 1/2 years ago I went down to City of Hope and they were great but said the same thing my current onc. said so that is why I am with him. I think maybe another trip down there is in order. P.s. I never tell them (city of hope) what he has said.
Thanks to everyone for caring enough to respond

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My hubby, Jim is stage IV nsclc, Adeno/Neuro, he was being treated in St. Louis, had a kidney transplant 16 yrs ago, the onc in STL was so scared to treat him with the big guns, after 9 months of single agents, Alimta, Taxotere and Gemzar, she told him Navelbine with a 5-10% chance of working or he could call hospice. POW!!
I couldnt wait to get home to call MD Anderson in Houston, had his first appt in Feb. We go every 4 weeks. He has 3 days of chemo. Carbo/Etoposide is what he should have had in the begining.
We are so grateful to be going to Houston, even if things do not go as we hope, we tried.
This onc has other ideas too. please go for the second opinion, can be a huge difference, it has been for Jim.
Cindy

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Why is it that nobody is talking about chemosensitivity test? I understand that it has been around since 2009? I understand that it is a test that shows what kind of chemo drugs is suitable for each patient so that the onc doesn't have to guess what drug to give to kill such patient's cancer. Why is it not commonly used and why most oncos don't mention it? Why? Why? Why?

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I think its used more than we are told. my dr. said to the nurse one time that I wasn't going to do well with carbo. I wasn't sure how he knew that I should of ask right then but I didn't. I will ask next time I go if he did that test on me. I didn't know about until you told me. thanks

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Sunflower, I think most doctors only apply what they learned in med school which is 20 years ago or so. Few are staying on top of the newest research. You'd think the insurance companies would be all over it as it would reduce their costs - if you know what chemo will work for a patient, you don't pay for months of useless treatment. But I honestly don't know why they don't do it routinely now. It's one of my biggest peeves right now as my second line chemo is not working.

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Go to Houston fast. Don't let them say LET'S TRY because they don't know if you have the right mutation for it.

If I had it all to do again I would have drugged my husband,who was n terrible bone pain and taken him there.

Please go.

Stanifa

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I read it from one of the post here in inspire that the test is only done in two places in the us. In long beach, California and Huntington Beach also Cal. I had my blood analysis done in Biofucos, Germany and got the result after a week. It was negative of cancer cells .Am already satisfied with the result because it means the cancer cells have not gone to my blood system yet. But the lab says maybe my blood samples were not so good coz I did not use their kit, or maybe because I was still on Tarceva that it was controlled. If I want I could send another blood sample using their kit that they sent. But I already started my chemo so it is not advisable to do it, anyway, am already contented with the result. will just wait for my chemo cycles to finish and see what appears on the pet ct after that. I hope that those who are not doing well with their current chemo would undergo this chemosensitivity analysis and that their oncos should know that this is a necessity and not a choice.

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Oh! thank you so much for your reply lutosflower and Shardane!

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I am stage 4 NSCLC with bone mets since end 2009.
Carbolatin+Gemzar worked for a while.
Cisplatin+Alimta did not work for me (despite feeling really sick on this chemo)
Tarceva did not work for me (despite feeling really sick on this chemo as well)

But then I went onto Navelbine - I was surprised to find (a) I had very few side effects and (b) excellent results with Navelbine.
I also decided to se a radiation oncologist to add low dose radiation to lungs and spine (even though it was not recommended by chemo oncologist, I felt so many Inspire people had benefited from radiation that I wanted a chance to try it).
Anyway, I am currently feeling fine (not sure whether just chemo or also the radiation - I suspect both helped - together with prayer). I am off chemo for a while - scan due in a couple of months.

So after 3rd line not working, I thought it was the end but surprisingly found 4th line very successful. We never know as everyone is different. But I would suggest a second opinion. Do you have NSCLC?

Good luck
Tanguera

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Tanguera,
I love stories like yours. They give me hope for the future. My "expiration date" passed 9+ months ago, and I am doing pretty good. Thank you for sharing your story. I looked up the word tenacious, your picture really was next to the word!

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Hi, my dad has 4 NSCLC. He was diagnosed in Oct. 2010, finding out there was a 5cm tumor and it also spread to his bones. He has been having chemo treatments every 3 weeks since then. He had radiation in the beginning and the dr's said that the tumor in his lung as all but dissappeared and they can see the cancer in the bone getting smaller. Lots of talk about possible remission. The problem is, he's lost 70lbs, he throws up (phlegm) alllllllll day long. He can't eat or drink anything. He's getting IV's for potassium, everyday, because it's too low for him to go under to get his throat stretched so he CAN eat, sometimes. He was doing better last week, put on 8lbs, had chemo again Monday, fine Wed and Thurs, started feeling bad mid Fri and yesterday was just horrible, same as today. My mother's a mess and being ripped apart by this and they're both the type that don't ask questions or want to learn about what's happening, they just shake their heads and say okay to the dr., whenever they actually see HIM. He has an appt every Monday and chemo every 3rd Monday and that's the only time they actually physically see him. It's his assistant every other time. I'm so frustrated and he's dying when I think there could be something done. Does he HAVE to have the chemo constantly like this or can he take a break to put some weight on. My mother keeps saying these dr's just need more patients to make another car payment and you know, I'm just about to agree with that. I need some advice, if possible, from anyone who might have or is experiencing something of this nature. I need help. Thank you
Bebop24

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When did he have his last CT or PET scan? What type of chemo is he getting? Can you go to one of the meetings with the Onc and ask serious questions?
If he's stable, meaning, the tumor hasn't grown and the bones lesions are disappearing, I'm sure he could take a break from chemo for a few weeks. I did and felt soo much better! After all, chemo is extremely toxic and the body needs a little time to recover. It might give him more strength to fight the disease, too.

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