survivors of Terminal Stage 4 lung cancer

stayingcalm said:

Waiting for chemo after radiation
Fran83 -
I'm fairly close to your Mom's age (53) and diagnosis - NSCLC with mets to the brain. It was only last December when the brain mets were discovered. I had surgery - a breeze - and then 20 or so whole-brain radiation treatments (and 5 more focused sessions), which were less than a breeze and took a couple of months to "recover" from. I say "recover" in a general way - I'm not so fatigued any more but I have some memory problems, never as much as I read about, though.

Anyway, my oncologist also had me wait before starting medication (Tarceva) - it was at least a month. They want to give your body some time to repair itself from damage done by the radiation before slamming it with more toxic drugs

As it turns out I was thankful for the break since I had a pretty bad reaction to the first high-dosage Tarceva (better now, slowly increasing the dose), and I can't imagine suffering through that while trying to come back from the radiation. So there are reasons for waiting.

Best of luck to your Mom!

Deb

Fran83 mets to the brain
how did they discover the mets to the brain I had surgery for adenocarcinoma the end of may
my dr. does chest xrays and cts but nothing else. so how am I going to know if it spreads to somewhere else the likely places I hear are the brain liver and bone. any info you can give me will help

Fran83 said:

that's good news
Dear Ruth,

I am glad to know that your mom will finally be getting treatment and you now have hope for her to save this devil!

If you mom is quite weak, maybe you can ask your doctor on the possibility of having a chemo sensitivity test, to find out which drugs would not work or would be least effective...

i do not know much about it... and my mom will have to probably go to another town to have it as they do not have it everywhere.....

My mom is doing fine for the moment. She is still doing her Whole Brain Radiation (WBR) and once she completes that she will have to do a CT scan to check if it is working... then 1 month rest to recuperate and then she will be starting with chemo. My mom has brain and bone metastisis.

Keep me informed about how your mom is progressing with her treatment.

Good luck and let's pray for the best.

Fran

Chemo sensitivity test
Where was the chemo sensitivity test done and how long did it take to get the results back? My husband was just diagnosed with stage IV of the lung and he doesn't want to waste time taking chemo with the wrong medicines.

thanks for starting this thread
Thank you for starting this thread, Stardust1. I'm meeting some people with our particular situation. I'm meeting even those like mine who have "Metz-to-brain".

cobra1122 said:

hope all are well
Just got a new check up and still confusing the Docs, My cancer has spread more but they still don't get my happy go lucky attitude. Well I aim to out last anything they say.. so the time limit thing is just a loose reference, you can keep going with the right attitude..

My Father's Diagnosis
My father, a 55 year old smoker of 40 years has just been diagnosed (not suprisingly) with Lung Cancer this past week. He had no idea he had cancer. Infact, 2 years ago he underwent back surgery to replace his L2,3 and 4 with a bone graft. They had herniated and ruptured, and were setting off a chain reaction. Therefore the graft was necessary. He had that surgery Thanksgiving week of 2008. For the past 2 years he has undergone much therapy, checkups and scans of various sorts. He has been X-rayed and checked multiple times and there were never any indications of cancer. This surgery and the subsequent months of pain medications led to a addiction to pain medication. Early in 2009 he was able to finally kick his addiction to the percocet. Around mid-2009 he started experiencing new pains in his legs and other parts of his body. Of course, as most, he just took tylenol or whatever he could and assumed that it was somehow related to the major surgery and the pains that he hadnt noticed before because of the high volume of pain medications he was taking. He ignored the pains. Around September of 2009 his ribs began to hurt. He went to the doctor and was told to just take it easy, there was a fracture. Nothing more was done at that time and no cancer was discovered. Thanksgiving of 2009 he began experiencing an increase in the pains in his lower right leg, ankle and shoulder area. Again, assumed it was wear and tear. He already has screws in his ankle since a injury he sustained as an athlete in his mid-20's. He just assumed the pain was a part of growing older and all the rough and tumble activities of his youth. I started to notice a tremendous decrease in his energy, outlook, and color around that time along with what appeared to be rapid aging. He just suddenly started to look frail and older and not the brave, strong (sometimes scary) man I remember!! Very strict, disiplined parent who taught me many things, stubborness among those The week before Christmas he woke up with excruciating pains in his shoulder area. He went to the doctor who took an X-ray and said that he had hurt his rotator cup. They put him in a sling and sent him home. He also took a full body scan to see if there was a common denominator between the pains he had been experiencing, which other doctors just dismissed. Wednesday of last week we recieved the news that 17 spots showed up on his body scan. His ribs (which had been hurting in September) had broken and his alleged rotator cup was actually a fracture to his humerous, collarbone and clavicle. The reason: Lung cancer that had metastatized to the bones. Less than a week later, yesterday, he underwent surgery. Because his bones are already so severly deteriorated where the cancer has spread, they surgically implanted metal in his right Tibia and Left Femur. They told us after surgery that they found (just prior to operating) that his shoulders/clavicle will need to be stabalized as well as both his arms. His bones are already so weakened that they have instructed him not to use his arms to pick himself up, sit up or anything. They are saying that even the slightest pressure will cause fractures/breaks. This is completely blindsiding the family as he was fine until last Wed (as far as we knew). All of the sudden he is this very fragile man who is being told he will not be able to utilize his extremities until surgically stabalized. In just the past week I have watched his front porch become handicap accessible with a ramp, a power chair has been brought to his home, he has undergone surgery, he his frail and in a bad way right now. We are being told the cancer originated in the Lung (and there is a mass present) but beyond that we are not being told ANYTHING about the odds/treatments etc. My research has concluded that simply based on the fact that it is Lung Cancer with Mets to the bone that it is staged as IV and that the prognosis is very very grim. But he is not being told anything other than that he will be wheelchair bound for a tremendous length of time. The paperwork has already been filed to retire him disabled from Civil Service. It's just all happening at once. In everything that I'm reading my own mood and mindset is getting worse. Of course I was shocked by the initial news, depressed, angry, denial, all 5 stages of grief were pretty much covered over a short 2 day period. The rest of the week has been filled with prepping for surgery, surgery itself and preparing for the aftermath and what might lie in the near future. It is reassuring to read your story. I hope my father has as much fight in him as you do. He's always been a strong man, but he already seems so defeated. His brother just died in November from the exact same thing and his father died from the same thing several years ago. The same exact trend with both of them, fine one day, diagnosed the next, dead within a very short period of time. For my grandfather it was a few months, for my uncle, a few weeks. My father appears to be dwelling on those familiar odds. And in my reading I've learned that this appears to be a likely outcome, but your story, gives me that little ray of hope in an otherwise dark and dreary world (atleast at the moment). It does appear that my entire world is falling apart in front of me. In June my father gave me away at my wedding, he appeared fine! And now, there is the possibility that he won't be around on my first wedding anniversary. I think that is the initial mindset when you recieve this type of news. Some moments I'm positive in my outlook and other moments I can't help but think about the other possibility. I know that's my brains way of "wrapping my head around" something my heart just can't comprehend. Thank you for inspring me, hopefully, sharing these types of positive stories will inspire my father as well. Best of luck with your continued treatment!!!!

Allycat21 said:

My Father's Diagnosis
My father, a 55 year old smoker of 40 years has just been diagnosed (not suprisingly) with Lung Cancer this past week. He had no idea he had cancer. Infact, 2 years ago he underwent back surgery to replace his L2,3 and 4 with a bone graft. They had herniated and ruptured, and were setting off a chain reaction. Therefore the graft was necessary. He had that surgery Thanksgiving week of 2008. For the past 2 years he has undergone much therapy, checkups and scans of various sorts. He has been X-rayed and checked multiple times and there were never any indications of cancer. This surgery and the subsequent months of pain medications led to a addiction to pain medication. Early in 2009 he was able to finally kick his addiction to the percocet. Around mid-2009 he started experiencing new pains in his legs and other parts of his body. Of course, as most, he just took tylenol or whatever he could and assumed that it was somehow related to the major surgery and the pains that he hadnt noticed before because of the high volume of pain medications he was taking. He ignored the pains. Around September of 2009 his ribs began to hurt. He went to the doctor and was told to just take it easy, there was a fracture. Nothing more was done at that time and no cancer was discovered. Thanksgiving of 2009 he began experiencing an increase in the pains in his lower right leg, ankle and shoulder area. Again, assumed it was wear and tear. He already has screws in his ankle since a injury he sustained as an athlete in his mid-20's. He just assumed the pain was a part of growing older and all the rough and tumble activities of his youth. I started to notice a tremendous decrease in his energy, outlook, and color around that time along with what appeared to be rapid aging. He just suddenly started to look frail and older and not the brave, strong (sometimes scary) man I remember!! Very strict, disiplined parent who taught me many things, stubborness among those The week before Christmas he woke up with excruciating pains in his shoulder area. He went to the doctor who took an X-ray and said that he had hurt his rotator cup. They put him in a sling and sent him home. He also took a full body scan to see if there was a common denominator between the pains he had been experiencing, which other doctors just dismissed. Wednesday of last week we recieved the news that 17 spots showed up on his body scan. His ribs (which had been hurting in September) had broken and his alleged rotator cup was actually a fracture to his humerous, collarbone and clavicle. The reason: Lung cancer that had metastatized to the bones. Less than a week later, yesterday, he underwent surgery. Because his bones are already so severly deteriorated where the cancer has spread, they surgically implanted metal in his right Tibia and Left Femur. They told us after surgery that they found (just prior to operating) that his shoulders/clavicle will need to be stabalized as well as both his arms. His bones are already so weakened that they have instructed him not to use his arms to pick himself up, sit up or anything. They are saying that even the slightest pressure will cause fractures/breaks. This is completely blindsiding the family as he was fine until last Wed (as far as we knew). All of the sudden he is this very fragile man who is being told he will not be able to utilize his extremities until surgically stabalized. In just the past week I have watched his front porch become handicap accessible with a ramp, a power chair has been brought to his home, he has undergone surgery, he his frail and in a bad way right now. We are being told the cancer originated in the Lung (and there is a mass present) but beyond that we are not being told ANYTHING about the odds/treatments etc. My research has concluded that simply based on the fact that it is Lung Cancer with Mets to the bone that it is staged as IV and that the prognosis is very very grim. But he is not being told anything other than that he will be wheelchair bound for a tremendous length of time. The paperwork has already been filed to retire him disabled from Civil Service. It's just all happening at once. In everything that I'm reading my own mood and mindset is getting worse. Of course I was shocked by the initial news, depressed, angry, denial, all 5 stages of grief were pretty much covered over a short 2 day period. The rest of the week has been filled with prepping for surgery, surgery itself and preparing for the aftermath and what might lie in the near future. It is reassuring to read your story. I hope my father has as much fight in him as you do. He's always been a strong man, but he already seems so defeated. His brother just died in November from the exact same thing and his father died from the same thing several years ago. The same exact trend with both of them, fine one day, diagnosed the next, dead within a very short period of time. For my grandfather it was a few months, for my uncle, a few weeks. My father appears to be dwelling on those familiar odds. And in my reading I've learned that this appears to be a likely outcome, but your story, gives me that little ray of hope in an otherwise dark and dreary world (atleast at the moment). It does appear that my entire world is falling apart in front of me. In June my father gave me away at my wedding, he appeared fine! And now, there is the possibility that he won't be around on my first wedding anniversary. I think that is the initial mindset when you recieve this type of news. Some moments I'm positive in my outlook and other moments I can't help but think about the other possibility. I know that's my brains way of "wrapping my head around" something my heart just can't comprehend. Thank you for inspring me, hopefully, sharing these types of positive stories will inspire my father as well. Best of luck with your continued treatment!!!!

Our Prayers
My family history is full of heart disease and cancer, so I can related to your Father think of the odds some times, but it doesnt mean the same for him. I hope that he can grasp a positive attitude and hang on to it, it will help him and everyone else.
I am presently on Hospice, was given on Jan 09 4-6 months left, well its been over a year on Hospice (2+yrs since cancer diagnosis) and I am still going, I think it is becasue I have a Positive attitude and a great support system that has helped greatly.


I wish your Father, You and You family a peace to accept what we cant change and the hope to cherish the time you do have, cherish it, no one has a forsure thing, anything can happen to anyone, even those with out this disease. Just hold strong to each other and cherish the day you have, and life for the moment, you cant change or live in the future, it will be here soon enough.

Our Prayers and Best Wishes to Your Father,You and Your Family,
Dan cobra1122) and Margi Harmon

CaringRN said:

Lung Cancer RN
I have been working with Lung cancer patients for quite a while now and I am sorry about your confusion. Let's just say you are not alone. They normally do not radiate multiple areas, which it sounds like your husband has. (Unless they become bothersome - painful, etc.) So it sounds like they are treating things the way they should - with multiple chemos. The first treatment didn't work, so they will try another one and should continue to do so. If they decide to stop, seek another opinion. There are trials out there and I can not tell you if there is one out there your husband is appropriate for. Everyone is different so just hang in there! Let me know if you have any other questions! I am here to help! I have a passion for what I do and I want to help people through this difficult time in their lives.........the last thing a patient or family should have to do is wonder if what they are doing is the right thing.

Why would treatment be changed
caringrn,
Can you tell me why my treatment has been changed. I have nsclc & 2 lymph nodes. I did 7 days of radiation and 1 day of carbo and taxol and 1 day of taxol. I was susposed to get 8 days of radiation but dr says they changed it to 7 days of rads for week , 2nd week will be 8 days of rads then a ct scan, third phase will be 7 days of rad instead of the original 8 days. Just dont understand why they cut my radiation treatments in week 1 and week 3 down to 7 times instead of 8 times.

suebloom said:

surviving
I am a survivor of stage iv lung cancer......diagnosed 7/08.

stage 4 lung cancer
That is what I wanted to hear. I am strong and I will beat this. Survival stories are what I am looking to hear. I think it is the faith you have and the will to live and the attitude. Thank you,

hi
I just got diagnosed with lung cancer stage 4, i'm 36 and i would love to know more about this, everything is completely new for me, so so far i think i'm a survivor, if there is anyone else out there with the same type of cancer i would love to hear form you but i don'tknow if this is the right channel, my e mail is diegogon74@yahoo.com.mx thanks a lot!

LULLA said:

WHAT TYPE OF LUNG CANCER DO YOU HAVE
HI
DO YOU KNOW WHAT TYPE OF LUNG CANCER YOU HAVE? WHAT IS YOUR TREATMENT GOING TO BE? BE POSITIVE THEIR ARE SO MANY SURVIVORS ON THIS WEB SITE IT IS SO ENCOURAGING TO READ ABOUT THEIR TREATMENTS AND RECOVERY.

GOOD LUCK

LULLA

hi
the doctors told me it was non small cell lung cancer stage 4, thats all i know, but the doctors weren't very optimistic about the prognosis they told me the average was 1 to 2 years and that they would be very surprised if they see someone reach 5 years, so i want to know if that is true or if there is more people out there with the same type of cancer and now is cured or has lived more that 5 years, i just want to know what are my options, thanks a lot for answering my questions, bye!

cobra1122 said:

There Are
There are many survivors with over 5 yrs under their belt, if you read my bio you will see that I have a complicated health status, but I am 2+ yrs and still going strong. No one can say forsure how long anyone has. We are all heading in the same direction, sick or not, and I for one have out lived many of my non-cancer friends and I just turned 50 in May.
Research your prognosis from your Doc, find out what the tests say. If your Doc doesnt want to talk, make him/her til you understand. It is your life, and you have rights. If your still unhappy get a second opinion.
There are many people who have rang the 5 year bell and are still going so dont give up, just palnt your feet frim and get ready to rumble. Kick some Cancer butt, You have a lot more to do with your treatment and your staying alive than anyone else.

Our Prayers and Best Wishes to You, Your Family, and Everyone,

Dan(cobra1122) and Margi Harmon

Thank you
Thank you this is very encourgaing for me to read.
Billie the Wife