Older people and NSCLC 3B diagnoses?

My 81 year old grandmother was recently diagnosed with Stage 3B NSCLC. She has a tumor on her lung as well as pleural effusion. She has fluid with cancer cells in the lining of the lung which is why she was told she cannot have surgery. She was very healthy before this diagnoses - living alone in her house, very independent and self-sufficient. She belongs to a quilting group, church choir, and volunteers at local nursing homes. Since her diagnoses 2 months ago, she is too weak to do much and uses oxygen much of the time to help her breathe. She is on Tarceva, but only takes it a few times a week because she had so much trouble with nausea and loss of appetite. The local doctor has in so many words said to go home and attempt to have the best quality of life remaining. We are really afraid that this has caused her to give up. Despite her age, for someone who was so healthy before her dx, I just feel like we can't give up so soon. I mean, she was just diagnosed - there has got to still be hope.
Does anyone have any advice or stories of your own to share? Perhaps any stories of older individuals fighting this awful disease? Thank you so much. I am so thankful to have happened upon this site. It has helped to just read other people's stories.

By cuddles53
Posted July 2, 2009 at 8:13 pm
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I would say her age is a factor here, but if she is as healthy as you said she had been , it could be her breathing getting her down so much, when oxygen is depleted in all of your organs it can cause severe fatigue also the cancer causes this, and as you mentioned now the Tarceva has knocked most of her energy out, she is not giving up if she is on her tarceva, they can use that in place of the chemo drugs that you must go and have IV injections. If she does have a good quality of life for the most part, it is about all we can really do. There are other things that can be tried, I will give you an idea on one, check out this site www.rationaltherapeutics.com this is a place that the sample of tissue from either the tumor or the pleural fluid can be tested to see which chemo medication will kill the cancer she has, I don't know if this is something she wants to go through or not, but it is an option, you can read about it and then call them, not much to it, but safety knowing you will only get a drug that will work on your particular cancer. Another drug that is not approved by the FDA but what I have read a lot on is called LDN, it stands for Low dose naltrexone, check this out also on the website by googling LDN, I have talked personally with people who are 2 1/2 - 3 year survivors taking this drug, some say it is not good to take it, but from what I have been told is it is safe in low doses and has been used for years, many people without disease at all take it to improve their own immune systems. so there are other choices if she can not tolerate the tarceva, she must tell the oncologist this, and let him know she plans on fighting this cancer, it is a hard decision when you get a little older because of course you are frail as it is. But I would say never give up hope, many do survive you know that right? she may live on with her cancer, and end up dying of something else entirely.Take care and god bless you both.
Sandy

By Granny888
Posted July 2, 2009 at 11:10 pm
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I'd definitely be going for a second opinion on this one. My first thought was == 81? I'll never see 81. Geesh 81? Nobody should have to be that old. I think I read a book when my dad had alzheimer's that kinda had that as the thing this guy kept saying. Or something close.

My mom wasn't 81. My dad wasn't 81. They were sick. My granddad and grandma on dad's side were. Healthy. Siblings, healthy. Mom's side -- forget it. I saw Oprah's show yesterday on how we should all easily live to be well over 100.

But as a 50 year old pre-diagnosis I was not THAT active. You are as old as you feel. As stage IV -- we're told early on we're going to die. As a nurse, it took a while for me, I KNEW that if someone had a tumor it meant not good things, lung cancer isn't something people SURVIVE with. I had already lost a mother. I don't think I ever said that out loud. And yet, when I was diagnosed, I knew I'd live at least a couple years. I thought I knew.... but I very very quickly found out I knew NOTHING.

Things have changed a lot. There is no reason an active 81 year old can't survive just because she can't dance the jig today. Does she want to survive going through the fatigue? THAT is the question. Why is she on tarceva? Is it working? She needs to get rid of what's there and get her energy back and she is not too old for a second opinion. Get a specialist. EVERYBODY should have a second opinion whether they are happy with their oncologist or not. Does she have to be tired? Maybe. Does she have to be THAT tired? Maybe not. Doctors have been known to change treatment based on side effects, and if this is one it might be time.

Whether or not your mom is giving up and is 'done' (she's not the first to work hard til the day she dies) is between her and God. Talk to her. Then start looking at specialists in lung cancer to see about getting her some more energy and a cure for her. I mean, it's up to her, but is she, well, done yet? It's the only factor that matters as far as I'm concerned.

By Granny888
Posted July 2, 2009 at 11:15 pm
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Oh, Also. It sounds like she is having so much trouble with her treatment, two questions there -- is is still helping? Does the doctor know? There is a whole closet--full of cancer treatments. She needs something she can stick with and help with the side effects, it sounds a lot like she is being brushed off especially since she doesn't take it when she doesn't feel good, she never feels good, and it hasn't changed? Something is wrong, that needs to be fixed.

By Luv4M-I-L
Posted July 3, 2009 at 1:32 pm
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I can't believe how much this sounds like my 80 yr. old mother in law. She went to the Dr. in January for a cough/weakness. He was treating her for asthma. They did chest xrays/ultrasound because of fluid in the lining of the lung. They found malignancy in the fluid; did a lung biopsy & found Stage IV in both lungs. Due to age the Dr. put her on Tarceva. She took it for 2 months, when she started developing a rash in her mouth as well as sores on her lips and in her nose. The Tarceva did not help so the Dr. stopped it and in a couple of weeks the symptoms cleared up. She was active, living alone, playing bingo, dominos, going on day trips with her senior friends, etc. She was in the hospital for almost 6 wks. during her diagnosis and hasn't been the same since. She is in a nursing home and cannot walk. Her spirits are still high. She is believing God for her healing. She's on oxygen all the time, but is not having trouble breathing and is only taking Tylenol for the pain occassionally. If your grandma is able to stay at home do all that you can to make that happen. We had to move my m-i-l out of her apt. and she is sad. Everything she knows has been taken away. Let your grandma spend the time she has with the people and place she loves. I think Drs. feel if a person is older it is easier because they've lived a full life, but I feel they have a better mindset and have had to live through hard times and have a stronger faith they us younger people do. If you have any questions or just need someone to vent to, let me know. I'll help if I can. God bless you and your family

By HighlandGuy
Posted July 3, 2009 at 6:06 pm
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To all you young people who concieve that 81 years old is being old: BALONEY1

You are only as old as you want to think you are!

There aren't any magicians in this business, but I know from experience that (1) only a few large cancer specializing facilities are really capable of providing competant care and treatment for lung cancer. and (2) 81 years of age is not to old!

In nearby Texas there are several Comprehensive Cancer Treat Centers recognized by the National Cancer Institute.

I would get over to M,D. Anderson Cancer Center in Houston, perhaps the best in the country, where they know how to treat lung cancer. Their phone number is 713 792-2121.

HighlandGuy

By abhinj
Posted July 5, 2009 at 6:20 am
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Hi:

As Cuddles has noted, there is a site for LDN.
I am 79 yrs yound and was dx in April with nsclc, mets to nodes and spine. Basically told 8mo of life left. I have researched LDN extensivly and have located a Dr. who will write a script and a Compounding Pharm. App't with Doc on 7-10. Will keep you posted.

Is anyone here taking LDN????

You can do research at LDNinfo.com.

There is always hope:-))
Abhi

By Lindy78
Posted July 5, 2009 at 8:13 am
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The last sentence of your post says it all to me..."there's got to be hope...". There is hope - there is always hope and you can have an important role in provding hope to your grandmother by helping her be positive and take each day as it comes. My Mum, (though younger than your gran) also is stage 3b with pleural efussion and has been taking chinese medicine herbs and they are making her feel like she has no cancer and her side-effects from chemo are minimal, just some tiredness but still able to do all the things she was doing before...Maybe it may help your gran also?
Lindy

By aeliznn
Posted July 6, 2009 at 4:30 pm
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All,

Thank you so much for taking the time to respond to my post. It has been a true inspiration to join this site and read about all of the hope and strength of those fighting the disease. The most frustrating part of this whole thing has been that people, including doctors, have basically written my grandmother off because of her age. It is like they think that because she has lived a long life already, she will not want to fight too hard and instead should just focus on alleviating the symptoms. But that is up to her, and I don't like that people are putting these ideas in her head which only bring her down and defeat her. It makes me so mad!!

She has been getting weaker and weaker lately. On Saturday when we went to visit, she was barely coherent and slept the entire time. She was diagnosed with cellulitis of the hand on Thursday and had been taking antibiotics for it, but on Saturday it looked terrible. Her finger and hand were humongous - so swollen - and intensely bright red. We ended up bringing her to the ER where they admitted her to the hospital, and she is still there. she is now recieving antibiotics intravenously. Last night, the hand was already looking better. And she was so alert! And smiling a lot!! It was a total turnaround from Saturday. Before we left, my dad asked her if she needed anything and she said "i just need to feel better." That was nice because to me that shows she does not want to give up.

Unfortunately, the latest cat scan showed spots on the liver now, which is not a good sign. However, I have read similar stories of others, so can only keep hoping. Unfortunately, I have some family members who are saying that she only has about 2 more months of life. This infuriates me because 1) who are they to predict this?? and 2) all that does is create a defeatist attitude and extinguishes hope. I understand that we never know, and it could be sooner than later - that is life. But in the meantime, the best any of us can do is to have hope and live each day with hope and a positive attitude, because a negative attitude gets us nowhere.

For now, she is continuing with the Tarceva. We contacted MD Anderson and they wanted some of the latest information from her local doctor and the surgeon before deciding if they will see her or not. Then if they will see her, she has to decide if it is something she wants to pursue. Hopefully she will.

Thoughts and prayers to all of you.
Ann

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