Stage IV NSCLC Adenocarcinoma Survivors?

ghovde
ghovde Member Posts: 4
edited March 2014 in Lung Cancer #1
My partner was diagnosed with Stage IV NSCLC early Dec 2005. It has spread to her lymphatic system and her heart. There is a large mass in the mediastinum which is inoperable as well as a tumor in her neck.

She is on taxol/carbo and after 4 treatments, the tumor in her neck is getting smaller which is great news. Even so, the oncologist has given her about a year to live.

I am devastated and would greatly appreciate hearing from any Stage IV survivors with similar symptoms.

Many thanks in advance,

Gloria

Comments

  • rpatt
    rpatt Member Posts: 23
    #2
    My husband was diagnosed with stage 3b at the end of March, beginning of April 2004. He had similar symptoms with an inoperable tumor in the mediastinum and several lymphnodes as well as pleural effusion. He responded very well to treatment and the last PET scan indicated no tumors only hotspots (possible areas of growth too small to be picked up). He has recently had a set back with his breathing, but it looks like he will make it past the year mark (he was told 10 mo. with treatment 1-2 without)
    Also, since this experience, we have met so many amazing survivors with amazing stories, I will relate one that sounds pretty similar to your partners situation. I ran into this lady in my work setting, whom I hadn't known before. She had been diagnosed with stage IV adenocarcinoma with mets to the heart and lymph system. She had undergone treatment with a great response and had not been on any sort of preventative drugs for the last 2 years with no reoccurance of cancer. It just goes to show how doctors can only give you their best guess and every case is unique.
    Good luck in supporting your partner and in taking care of yourself through this process!
  • Plymouthean
    Plymouthean Member Posts: 262
    #3
    Hi Gloria. I was diagnosed with nsclc, stage 3b, inoperable/incurable. That was over 4 years ago! With treatment, the tumor was shrunk, then surgically removed. Chemo took care of the "bad guys" in my system, and here I am, cancer free. I agree, - the doctors have to go with a "best guess", but if you look at statistics, remember, someone has to make up that percentage of survivors. It might as well be your partner. Think positive! And pray a lot, with us, for recovery!
  • ghovde
    ghovde Member Posts: 4
    #4
    rpatt said:

    My husband was diagnosed with stage 3b at the end of March, beginning of April 2004. He had similar symptoms with an inoperable tumor in the mediastinum and several lymphnodes as well as pleural effusion. He responded very well to treatment and the last PET scan indicated no tumors only hotspots (possible areas of growth too small to be picked up). He has recently had a set back with his breathing, but it looks like he will make it past the year mark (he was told 10 mo. with treatment 1-2 without)
    Also, since this experience, we have met so many amazing survivors with amazing stories, I will relate one that sounds pretty similar to your partners situation. I ran into this lady in my work setting, whom I hadn't known before. She had been diagnosed with stage IV adenocarcinoma with mets to the heart and lymph system. She had undergone treatment with a great response and had not been on any sort of preventative drugs for the last 2 years with no reoccurance of cancer. It just goes to show how doctors can only give you their best guess and every case is unique.
    Good luck in supporting your partner and in taking care of yourself through this process!

    Thank you so much for your reply. Every story of survival gives me new hope.
    Gloria
  • ghovde
    ghovde Member Posts: 4
    #5
    Plymouthean said:

    Hi Gloria. I was diagnosed with nsclc, stage 3b, inoperable/incurable. That was over 4 years ago! With treatment, the tumor was shrunk, then surgically removed. Chemo took care of the "bad guys" in my system, and here I am, cancer free. I agree, - the doctors have to go with a "best guess", but if you look at statistics, remember, someone has to make up that percentage of survivors. It might as well be your partner. Think positive! And pray a lot, with us, for recovery!

    Wow! 4 years! I feel better and have renewed hope.
    Thank you!

    Gloria
  • domino216
    domino216 Member Posts: 13
    #6
    My husband was diagnosed with Stage III B NSCLA Andencarcinoma in February, 2004. He has had 33 radiation treatments and three different types of chemo combinations since then. First-Taxol/Carboplatin, Second- Gemzar/Navelbine, Now at stage IV. Third- Alimta (January of 2005), which he responded to the best and was stable well until November of 2005. After tests the progression was more drastic, more growth in lung and liver and his mass in abdomin area. Fourth-Taxotere/Citsplatin for only three weeks until he had surgery in his small bowel.

    January 6, 2006: My husband had surgery which was found 2 masses each the size of your fist and about one and a half feet of his small bowel was removed. Found out that this is another cancer large B cell Lymphoma. The doctor said that was better finding that out than having those large masses being a metassis from the primary lung cancer because it is more curable. He has to now wait about 3 weeks for him to heal then the oncologist doctor will decide what kind of chemo he will go on next.

    Was at doctors yesterday and he wants another pet scan done to see where he is. He said he will have to do some thinking about what the next route will be with the two cancers. He still has not given up the possibility of the chemos out there that can be used and can respond to both.
  • reinstones1
    reinstones1 Member Posts: 92
    #7
    Hi Gloria-- I posted my own message above, but my Mom was diagnosed with Stage IIIB NSCLC (adenocarcinoma) in early December too. Mom also has malignant pleural effusion (although still in the lung, we are told that the pleurae are considered a site of spread). She just started chemo (taxol/carboplatin) on 1/26/06. So far so good. She tolerated the first treatment quite well.

    We want to be very hopeful, as Mom's spirits are good, and she describes herself as being "strong as an ox". Yet, no one is saying much about life expectancy, other than "1 to 3 years if she does chemo". However, I am learning that there's always cause for hope, and there are NO absolutes. Just because a doctor tells us something doesn't make it SO.

    I have been petrified for the last 7 weeks-- I have been in such a black place. Maybe we can keep in touch. I will have you and your partner in my thoughts and prayers.
  • ghovde
    ghovde Member Posts: 4
    #8
    reinstones1 said:

    Hi Gloria-- I posted my own message above, but my Mom was diagnosed with Stage IIIB NSCLC (adenocarcinoma) in early December too. Mom also has malignant pleural effusion (although still in the lung, we are told that the pleurae are considered a site of spread). She just started chemo (taxol/carboplatin) on 1/26/06. So far so good. She tolerated the first treatment quite well.

    We want to be very hopeful, as Mom's spirits are good, and she describes herself as being "strong as an ox". Yet, no one is saying much about life expectancy, other than "1 to 3 years if she does chemo". However, I am learning that there's always cause for hope, and there are NO absolutes. Just because a doctor tells us something doesn't make it SO.

    I have been petrified for the last 7 weeks-- I have been in such a black place. Maybe we can keep in touch. I will have you and your partner in my thoughts and prayers.

    Hi, thank you for sharing what's going on with your mom. Yes, I would like to stay in touch too. This can be such a lonely experience but I'm getting quite a bit of information and comfort from connecting with folks on this site. My thoughts and prayers are with you and your mom too.
    Gloria
  • yasamin2010
    yasamin2010 Member Posts: 3
    #9
    ghovde said:

    Hi, thank you for sharing what's going on with your mom. Yes, I would like to stay in touch too. This can be such a lonely experience but I'm getting quite a bit of information and comfort from connecting with folks on this site. My thoughts and prayers are with you and your mom too.
    Gloria

    I am trying to find
    I am trying to find survivors of adenocarcinoma. Please reply back if you see this!
  • yasamin2010
    yasamin2010 Member Posts: 3
    #10
    Plymouthean said:

    Hi Gloria. I was diagnosed with nsclc, stage 3b, inoperable/incurable. That was over 4 years ago! With treatment, the tumor was shrunk, then surgically removed. Chemo took care of the "bad guys" in my system, and here I am, cancer free. I agree, - the doctors have to go with a "best guess", but if you look at statistics, remember, someone has to make up that percentage of survivors. It might as well be your partner. Think positive! And pray a lot, with us, for recovery!

    Hi Plymouthean,I just read
    Hi Plymouthean,

    I just read your story. PLEASE let me know you are here and how are you doing?
  • sammigirl2215
    sammigirl2215 Member Posts: 5
    #11
    yasamin2010 said:

    I am trying to find
    I am trying to find survivors of adenocarcinoma. Please reply back if you see this!

    adenocarcinoma.
    Yasamin2010, I have Nsclc Stage 4 adenocarcinoma. I was diagnoised on Feb 5, 2010. They cannot operate on it. It is in both lungs , there was a spot on the kidneys and my lymph nodes around my neck. I had 26 treatments of radiation and have been on chemo since March. Right now I have Almitra every three weeks. I have to tell you I feel great. I was told on Wednsday that I am in a partial remission. I was in one for a few weeks last spring, but the cancer started growing again.Now I am in it again. I feel I am a survior. The only side effect I have had is being tired. My appetite is great, I havent lost any weight.The doctors at first thought maybe I had 12-14 months, but I don't believe it. I feel to good. Just be positive. Only God knows when I will die. If I can help you in any way let me know.
  • NayPaul
    NayPaul Member Posts: 230 Member
    #12
    sammigirl2215 said:

    adenocarcinoma.
    Yasamin2010, I have Nsclc Stage 4 adenocarcinoma. I was diagnoised on Feb 5, 2010. They cannot operate on it. It is in both lungs , there was a spot on the kidneys and my lymph nodes around my neck. I had 26 treatments of radiation and have been on chemo since March. Right now I have Almitra every three weeks. I have to tell you I feel great. I was told on Wednsday that I am in a partial remission. I was in one for a few weeks last spring, but the cancer started growing again.Now I am in it again. I feel I am a survior. The only side effect I have had is being tired. My appetite is great, I havent lost any weight.The doctors at first thought maybe I had 12-14 months, but I don't believe it. I feel to good. Just be positive. Only God knows when I will die. If I can help you in any way let me know.

    Just Starting
    Sammigirl2215

    In my definition you are a survior. Keep on at it.

    After losing my mother in July to metastic breast cancer, we were very surprised when my wife's nagging cough turned out to be cancer. Course, almost everyone I know who has gotten cancer seems pretty surprised. Even if they are not surprised... there is still the shock and sobering reality. In our case because we have four young children at home, who saw grandma sick, we must 1. explain but not overwhelm,
    2. teach them to pray, but understand, that we are not praying for a mircacle, but for strength and wisdom. Although I am agnostic, I do believe in the power of prayer as prayer clears our head, helps establishes priorities and reminds us that others are out there with real needs and wants as well.

    My wife's basics for those that want to know so they can compare similarities...
    40 yrs old, non-smoker, white, female, stage 4 nsclc- mets to spine, 3.4 cm primary tumor in lower right lobe.

    I have a math degree and while I don't like the odds, have tried to reassure my wife that we need to hope for the best and plan for the worst. That the available statistics leave out a lot of the whole picture. PLUS, how many 40 year old non-smokers are there with lung cancer? Not a statistically significant amount. Since we did not fit into those stats, why try to fit into the grim ones presented us? My mother made this very clear to me about a year before she passed. She said, "Do you know how many people have called, written, hugged and told me they were praying for me?" Then she added, "Do you know several of those people have DIED from cancer or other illnesses?" The fact is, none of know how much road we have left.... EVEN when we "know."


    My wife was diagnosed September 10th. Other than the nagging cough, nobody would know she was sick. We walk several miles a week, and walked 4.5 miles around a lake just two days before. We still walk although the chemo has slowed her down a little.

    If it is of value to anyone, she started chemotherapy on 10/7/10 and is on a clinical trial. She takes carboplatin, taxol, avastin every three weeks. This will continue for six cycles. EVERY week as part of the STUDY, she receives cetuximab. After the six cycles(assuming a response) she will then receive avastin every three weeks and weekly cetuximab until progression or until her body cannot tolerate.

    Her attitude is tremendous, and overall the first round of chemo was not too bad. She's pretty strong. The second round of cetuximab has caused a pretty large rash on back, chest, face and scalp.

    We are hoping for a lot of years, but are trying to remember that persiverating too much on prognosis will prevent us from enjoying each day. Life is too full of up's and down's with four kids, trying to earn a living, and other "stuff" to WORRY everyday about this. It is easier said than done, but as the saying goes, "Fake it 'til you make it."
  • Artegirl
    Artegirl Member Posts: 1
    #13
    NayPaul said:

    Just Starting
    Sammigirl2215

    In my definition you are a survior. Keep on at it.

    After losing my mother in July to metastic breast cancer, we were very surprised when my wife's nagging cough turned out to be cancer. Course, almost everyone I know who has gotten cancer seems pretty surprised. Even if they are not surprised... there is still the shock and sobering reality. In our case because we have four young children at home, who saw grandma sick, we must 1. explain but not overwhelm,
    2. teach them to pray, but understand, that we are not praying for a mircacle, but for strength and wisdom. Although I am agnostic, I do believe in the power of prayer as prayer clears our head, helps establishes priorities and reminds us that others are out there with real needs and wants as well.

    My wife's basics for those that want to know so they can compare similarities...
    40 yrs old, non-smoker, white, female, stage 4 nsclc- mets to spine, 3.4 cm primary tumor in lower right lobe.

    I have a math degree and while I don't like the odds, have tried to reassure my wife that we need to hope for the best and plan for the worst. That the available statistics leave out a lot of the whole picture. PLUS, how many 40 year old non-smokers are there with lung cancer? Not a statistically significant amount. Since we did not fit into those stats, why try to fit into the grim ones presented us? My mother made this very clear to me about a year before she passed. She said, "Do you know how many people have called, written, hugged and told me they were praying for me?" Then she added, "Do you know several of those people have DIED from cancer or other illnesses?" The fact is, none of know how much road we have left.... EVEN when we "know."


    My wife was diagnosed September 10th. Other than the nagging cough, nobody would know she was sick. We walk several miles a week, and walked 4.5 miles around a lake just two days before. We still walk although the chemo has slowed her down a little.

    If it is of value to anyone, she started chemotherapy on 10/7/10 and is on a clinical trial. She takes carboplatin, taxol, avastin every three weeks. This will continue for six cycles. EVERY week as part of the STUDY, she receives cetuximab. After the six cycles(assuming a response) she will then receive avastin every three weeks and weekly cetuximab until progression or until her body cannot tolerate.

    Her attitude is tremendous, and overall the first round of chemo was not too bad. She's pretty strong. The second round of cetuximab has caused a pretty large rash on back, chest, face and scalp.

    We are hoping for a lot of years, but are trying to remember that persiverating too much on prognosis will prevent us from enjoying each day. Life is too full of up's and down's with four kids, trying to earn a living, and other "stuff" to WORRY everyday about this. It is easier said than done, but as the saying goes, "Fake it 'til you make it."

    Stage IV NSCLC with mets but no symptoms
    Around june of this year, we noticed a swelling in my mom's neck (under the jaw, in the submandibular gland). There's no pain. She was operated on on Sept 21 and frozen section biopsy was done. Turns out it's metastatic lung cancer. Doctors did a CT scan and found a huge mass in mom's left lung (8cm x 7cm). plus there are also some in the right lung. we are so surprised because other than the swelling, my mom looks like a healthy 63 y.o. My mom is firm that she doesn't want chemo. she prefers alternative treatment - she's doing now the flax oil + cottage cheese (Budwig protocol). she also stopped eating meat and processed food - it's now all organic fruits and veggies. she's also taking vitamin B17. it's been a month now since her operation and she says she feels healthy.

    I consulted an oncologist yesterday, and Iressa was recommended. The onco recommended Iressa because she said it works best on NSCLC on non smoker Asian women.

    We are all so confused now. When we look at mom, we don't see a sick person. But the onco said 1 yr at most. Anybody here who's taking Iressa? How was it? What are your thoughts on alternative treatment vs orthodox medicine?

Discussion Boards