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Hi everyone I am new to this group my husband has stage4 lung cancer with mets does not look good for him we were told 2 months without treatment maybe a year with he choose treatment we are into his 3rd round of chemo and have a ct scan friday to see if it is working he does chemo every 3 weeks just wondering if anyone else is going trough the same thing and how it worked for them
Exercise Cancer Surgery Back pain Coumadin Avastin Diabetes Pain Tarceva Carboplatin Palliative care Lung cancer Depression Stress
Hi sunshine,
First of all get that right out of your head about 2 months without treatment, and maybe a year business, these doctors just talk out of their heads! Unbelievable. I also was told with a smirk on his face, from my oncologist that I had 12 to 15 months with treatment, I also have stage 4 non small cell lung cancer, it has spread to my lymph nodes. so far I have had radiation, and then it was followed by chemo, the first chemo I had I was allergic to it, so they gave me another chemo agent which was Gemzar, this was in 2006, I was diagnosed feb 2006, one week after my husband died, he also had lung cancer, his was small cell, he lived over 5 years with his cancer and they had given him 3 months with treatment. I do not think to this day, the actual cause of his death was from cancer, maybe a complication from all of his treatments but not the cancer.
The statistics you will read about are scary also, it is good to get some knowledge about all of what is going on in your life, however do not be so fearful of everything you read. I have many friends still alive that were supposed to die also, the stats are done and written from a few years ago, new treatments today are not only keeping us alive longer, in some cases patients are miraculously being cured, the latest I heard is if we can make it 5 years and over, it may be considered a cure, we still have a higher chance of getting a cancer back but not necessarily lung cancer. It almost seems to be now like an illness that is treatable like diabetes, not curable in the sense that you ever let your guard down, but something that if another type tumor pops up and spreads to another area, then another treatment is done, and so on, and so on. We need to keep on until a full blown cure is found for all of us. I have faith, maybe in my lifetime this will happen.
It is not a picnic down the road, there are many tests, many emotions and many heartaches you will encounter, no doubt a challenge. But.. with hope, and prayers, better eating habits, exercise, humor and green tea of all things!! Life can, and does go on. This is an absolutely wonderful support group with many caring, and encouraging individuals both cancer survivors themselves, as well as their caregivers, a little something to learn here from everyone.
I have never been one for a support group, but.. this has changed me, I find, I am liking this group on here, I find them very helpful to me, and I also feel a great need to reach out and help someone new to this scenario. If I could survive this with all of my medical problems, anyone can. I have blood clots in my aorta of the heart and in my pulmonary artery, I am being treated with a blood thinner called coumadin. I go monthly and prn for blood tests to see if my blood is basically thin enough so I don't get any more blood clots. This is one of the problems with cancer, it can cause other medical issues.
The many different feelings you will go through are things we may be able to help you with. You will probably find every time you have a scan to get after treatments, a big fear envelopes you, it is a fear of the unknown, and even after all treatments are finished and you go into a remission, (this is what we aim for), it is still scary because it goes through your head that it might come back, so as I said it is a journey, and we can help you travel through it, if you let us. Read on, you will find a lot of hope and inspiration from being here. Good luck to you my friend, and God bless.
From Sandy
Yea mine was fairly extensive, fist-sized mass in right lung mets to lymph nodes and 3 other known places.
For me, six months of chemo and there's no obvious trace left of the cancer. I am now a year post-diagnosis.
Don't look at stats, and remember your doctor's best guess can't be more than that -- a guess. It's always wise to have affairs in order, but beyond that a kick butt attitude is your best best to kick butt.
Hi, I agree do not look at stats, everyone is different, never give up hope, and fight!! Karen prayers help too!!
The oncologist we consulted with at Johns Hopkins last April after my husband was diagnosed with Stage IV poorly differentiated, adenocarcinoma NSCLC said if you focus on statistics then you'll become a statistic. He told us that the statistics are based on a bell curve - they throw out the first 12.5% because those folks die within 6 weeks (they've had the disease for a while but got such a late diagnosis there was nothing to do for them plus he said they tend to be 70+ and already in very poor health). He said they throw out the last 12.5% on the curve because those folks do live 5+ years. So he said the moral was that if you wanted to focus on being a statistic to focus on the last 12.5% and be a 5+ year survivor. He told us that medically they don't have a "cure" for lung cancer but he said people are living with lung cancer. Fighting isn't for wimps though because the disease and the side effects from the chemo can be grueling. I think more than anything this year what I've learned from all this is that everyone is an individual. There is no way for any doctor to completely predict how well a patient will do. A month ago when it seemed like maybe we were nearing the end, I asked our onc were we getting close and she told me "I've seen patients who I've thought would make it a long time, die. I've seen patients who I thought wouldn't make it 6 weeks make it for a long time. So I'm telling you, Laura, only God knows. I treat the disease but only God knows when it's over." I'm trying to hold that close to me. Bruce is having a hard time again now. The fear and the uncertainty is so hard but I keep trying to remind myself to live each day and focus on our fight and not on statistics.
Hang in there.
Hi Sunshine,
Doc's are just speculating. My origininal dx in 1999 was stage IV NSCLC. 10 years coming up in July. Original time frame was 12 mos. 24 if I was lucky. Was hospitlized in 2008 with pnuemonia and told maybe 1 to 2 weeks back in August so be sure my affairs were in order. My body has taken a beating over the last 10 years, but every day is my birthday. My best thooughts & prayersc are with you & your husband. Keep focused on your name, Sunshine.
Merlin
Good Morning Sunshine!
I joined this group back in Jan or Feb. My husband has stage 4 lung cancer with mets to several bones, adrenal glands and lymph nodes. At first I would scour the internet looking for answers, but only became more depressed. Once I found this site and realized these are real people, living past those statistics that upset me so. My husband was dx in Dec. He has had a rough time, but we are thankful for every single day, both good and bad. Currently he just finished round 4 of chemo, had a CT yesterday to see whats going on. His first CT after 2 rounds showed all his lung tumors had shrunk and some were compelely gone, but the other tumors had grown. We are hoping these last two rounds of chemo has everything shrinking.
Take one day at a time, sometimes one hour, but come back here often and talk, ask questions.
Best of luck to you and your family. Many prayers.
Thank you all so very much. I was so down and out about my hubby total gloom and doom. You all have given me hope for him a new outlook. i wish everyone the very best in treatment as it has been hard for him. Thanks again
Sunshine, I have not gone through the same thing, but I can only echo what others have said: Don't listen to prognoses. As Lawrence LeShan, author of the classic, "Cancer as a Turning Point" said, "What, does your doctor have a golden telephone to God?!"
Not to give you "false hope" (though I don't believe any hope is false), I can't tell you how many people I know and have read about who have far far outlived any prognosis, and even died of causes other than cancer!
Finally, you may have gone this route already, but I strongly believe in second and third opinions. My cousin got one that saved her life when she went to UCSF.
You are not alone, and you have all of our prayers, especially on Friday. I will send prayers for good results!
With love and always hope,
Lori
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Lori Hope
www.LoriHope.com
I believe "stats" were something a lot of bored people who had to much time on their hands and actually they were probably to smart for their own good, came up with for something to do. Why else would anyone go around and research a bunch of useless numbers. For that what "stats" are: a bunch of useless numbers. WE all are told stats and for the most part the "stats" were wrong for most of us. We either outlived what the stats said we would or we lost the battle sooner. I am fortunate for I beat the "stats" and made it to...where I am today, here alive and writing to you. Don't bother with stats unless you want to fight to "prove" them wrong.
Good luck and God Bless You.
robin
Granny888,
Did you do chemo only ? My husband was diagnosed with stage 4 today and they can't do radiation. he will do chemo every 3 weeks. Thanks !
I was diagnosed Oct 07 with stage 4 to lung lymph nodes in chest and abdomen and started carbo/taxol/avastin x6 cycles, avastin alone x 6 months, alimta x 6 months, tarceva x 2 months (didn't work) and just started gemzar today. I am still working full time at a research clinic as a nurse practioner. I have tolerated all chemos so far and have missed very little work. That is my story. I freaked out when I was reading stats. My doctor will not give me a time line. I had excellent response to the first chemo and I asked how long she predicted I would live. She said you know the stats, but I am not a fortune teller. I don't know how long you have. Prepare for the worst, but hope for the best.
I was sailing along with all my chemos working at least for a few months. Then wham I had some progression of the cancer on the tarceva. So my doctor said it's time to hit this cancer and hit it hard. I'm giving you the gemzar and we'll see how your blood counts come out. If you do OK with that, we will consider adding carboplatin.
My advice is to make a list of questions to ask your doc and don't be afraid to ask. I love my doc because she helps give me strength. She knew I was really down this week because we had high hopes for the tarceva. Then today when she came in and said it's time to hit this cancer and hit it hard, and that is what we are going to do. That got me revved up and back in my fighting spirit.
This is all about me, but I hope my journey will help give you hope and inspiration. If one person can make it to fourth line of chemo, another can. Best of luck in the fight!
Sue M
Sunshine, my husband was given his stage of IV this morning and we were told the exact same thing as you. It's like the Dr.'s read from a form letter and I believe it's the worst thing for a person to hear. It's already made my husband not eat today when he had hope yesterday. I wish they wouldn't give a prognosis at all. I am getting all of my hope from this site, but, all I can do is relate your stories to him and it isn't working on him, yet.
There is ALWAYS hope! Treatments are changing so rapidly - you just need to know how to be at the right place and time. I was dx in Sept. '08 w/ stage IV lung (no symptoms, never smoked!) and have learned so much since then. The one thing I know for sure is that there are so many drug options out there and its really a guessing game which ones will be the most effective on each individual, and which will have toxic side effects. It's so important to get it right at the start. First thing I did was contact a lab that performed an EVA-PCD test on my tumor. There were several possible drugs indicated in the protocol books, but the EVA-PCD test trippled my odds of success by identify which ones actually killed kill my cancer in the lab. I'm doing great, have never been sick and my tumors are well in remission. Each person's cancer is unique, and novel combinations can work amazingly well. Even if you have had failed treatments or are underway with something else, This simple test can help predict the best treatment for you. It really has changed my life. Google EVA-PCD and you'll get lots more info.
Yes, chemo only. Wasn't operable and they were going to do radiation until they discovered the mets at which time they declared "palliative care!" and told me radiation would cause me more harm than good (esophagus problems etc.) and since it couldn't be curative they wouldn't do it.
Six months of chemo is all it took for me. For now.
Thank you Granny888 ! Those are the exact words they told us yesterday and you have renewed our hope ! Maybe he will eat again today.
Oh Granny, I forgot to askm are you taking any supplements like vit C, or any huge blasts of anything extra ?
If he has problems with side effects, ask about lower dose chemo -- it amounts to the same. Basically they do this once a week and then a week off at a lower dose than if they do it once every 3 weeks. There are different ways of looking at it, in one case you have more time 'off' and in the other you just don't get as sick in the first place, at least I think that's the theory. Worked well for me.
We are doing chemo only ever 3 weeks to. He had his 3rd round Tuesday and it has really kicked his butt this time. He had a ct scan Friday and we will have the results Tuesday. I refuse to belive he will not survive this. He retired in June and we had big plans for the golden years so he has to stick around for that. We have 8 grandkids who adore him and are not taking this very well our oldest is in Afganastan now in the army it is hard for him to be gone we raised him most of his life so i do not share most of the bad stuff with him.I do not want to distract him from his job he has to do. Keep us in your prayers.
I am so sorry i know how you feel i felt like a mac truck hit me my husband did not say anything for a few days then was asking me what the dr said i told him everything I also told him if he wanted to fight he had to fight i can not fight for you he choose to fight i tell him all the positive things i read he it seems to help him maybe your husband has to let it sink in tell him to fight good luck to you keep me posted
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