Stage 3B Non Small Cell Lung Cancer - Need hope

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Comments

  • beatallted
    beatallted Member Posts: 4
    ecross23 said:

    Update
    My mom is now 4 weeks into her treatment. Today she started her second cycle of chemo. So far she has been doing really well. She lost her hair after about 3 1/2 weeks. About a week after chemo ended her white blood count went down but quickly went back up after a shot. She amazingly still has her appetite. She is really dreading this second round of chemo. She had one rough night during the first round with chills. But other than that just fatigue and a bit of nauseau. Her coughing has gotten worse. Which she says is calmed by a cigarette. She says the doctor says it's ok to still smoke in moderation so she still continues to smoke 3-5 per day. I know this is a lie and I want to knock her upside the head and tell her this is what got her in this mess to begin with but I can't add to her stress.

    9 days of treatment left and then we wait 4-6 weeks to repeat the catscan. Was surprised to hear from my mom that no matter the results that this would be her only treatment. Anyone experience this? I thought if the tumor shrunk they would move on to another cycle. Then my dad says they are just trying to improver her quality of life. Are they not telling me everything? Just not what I expected to hear.

    Thanks

    Eva

    She is getting more treatment than I did.
    She needs to crush her cigarettes and realize, she has a chance but not if she is going to put one of them between her lips. I got a call that I had signs of emphysema. I had tried 10 tiems to quit. I smoked all of my adult life. I got so mad at myself and asked myself "who did I think I was that I could possibley beat the odds knowing what the outcome would probably be?" I never smoked another one. I was so mad at myself, it didn't even bother me. I had to focus on getting healthy.
  • MzRushing
    MzRushing Member Posts: 1
    deltafun said:

    NED
    Believe me there is hope. My name is Frank AKA deltafunand I posted the above post on Inspire. When I was first diagnosed I thought I only had a few months to live after reading all the statistics. I found web sits like this one and I started feeling like maybe there is hope which gave me great peace of mind.

    It will be one year next month and I was just told last week that I am now NED. I guess what I am trying to say is please do not give up! There are a lot of people out there that have survived for many years with stage 3b and stage 4 lung cancer,

    best wishes and stay tough, think positive!

    Frank AKA deltafun

    Thanks!
    Thank You for the inspiration. My dad is 70y/o and he was diagnosed on yesterday with Stage 3b Lung Cancer. After reading statics, they all basically showed survival rate being 12-13 months. He has not started chemo or radiation yet, but it is soon to come. My parents have been married for 43 yrs and I have 6 other sisters who all are very concerned and worried about what to expect next. We are very concerned for him, because my dad is already a small man, was weighing 142, but has since lost 11 lbs and it concerns us what the chemo and radiation may do to him. I guess all we can do is trust GOD and know its all in his hands, no matter what statics say.
  • ecross23
    ecross23 Member Posts: 3
    ecross23 said:

    Update
    My mom is now 4 weeks into her treatment. Today she started her second cycle of chemo. So far she has been doing really well. She lost her hair after about 3 1/2 weeks. About a week after chemo ended her white blood count went down but quickly went back up after a shot. She amazingly still has her appetite. She is really dreading this second round of chemo. She had one rough night during the first round with chills. But other than that just fatigue and a bit of nauseau. Her coughing has gotten worse. Which she says is calmed by a cigarette. She says the doctor says it's ok to still smoke in moderation so she still continues to smoke 3-5 per day. I know this is a lie and I want to knock her upside the head and tell her this is what got her in this mess to begin with but I can't add to her stress.

    9 days of treatment left and then we wait 4-6 weeks to repeat the catscan. Was surprised to hear from my mom that no matter the results that this would be her only treatment. Anyone experience this? I thought if the tumor shrunk they would move on to another cycle. Then my dad says they are just trying to improver her quality of life. Are they not telling me everything? Just not what I expected to hear.

    Thanks

    Eva

    Update #2
    I guess it's been awhile since my last update. So we had a good scan in May. Things had shrunk by 1/2 and the doctors even thought the remainder could be scar tissue. Then our world was turned upside down in August at her next scan when we found out it had grown back. Her radiologist said it was as big as when we first started. So the oncologist suggested more chemo. 3 days of chemo with 3 weeks off and another 3 days. We just got the results back from her scan and the chemo did nothing. The tumor in her lung has actually grown a few millimeters. So now the oncologist says we are no longer looking for a cure but just to prolong her life. He is now suggesting Tarceva. Has anyone had any success with this drug? The coming winter scares me to death. Mom's lung function is pretty good right now and the doctor doesn't feel that her breathing would be the thing to kill her. More likely an infection. She seems to get bronchitis pretty badly each winter and it worries me that it might take her life this year.

    Need more hope! It's starting to fade fast.

    Eva
  • z
    z Member Posts: 1,414 Member
    ecross23 said:

    Update #2
    I guess it's been awhile since my last update. So we had a good scan in May. Things had shrunk by 1/2 and the doctors even thought the remainder could be scar tissue. Then our world was turned upside down in August at her next scan when we found out it had grown back. Her radiologist said it was as big as when we first started. So the oncologist suggested more chemo. 3 days of chemo with 3 weeks off and another 3 days. We just got the results back from her scan and the chemo did nothing. The tumor in her lung has actually grown a few millimeters. So now the oncologist says we are no longer looking for a cure but just to prolong her life. He is now suggesting Tarceva. Has anyone had any success with this drug? The coming winter scares me to death. Mom's lung function is pretty good right now and the doctor doesn't feel that her breathing would be the thing to kill her. More likely an infection. She seems to get bronchitis pretty badly each winter and it worries me that it might take her life this year.

    Need more hope! It's starting to fade fast.

    Eva

    Eva
    Please visit the Inspire web site for lung cancer. There are many survivors who use the Tarceva and lots of information there. This is a targeted therapy drug and mutations are involved which the posts explain. I wish you the best. Lori
  • dennycee
    dennycee Member Posts: 857 Member
    ecross23 said:

    Update #2
    I guess it's been awhile since my last update. So we had a good scan in May. Things had shrunk by 1/2 and the doctors even thought the remainder could be scar tissue. Then our world was turned upside down in August at her next scan when we found out it had grown back. Her radiologist said it was as big as when we first started. So the oncologist suggested more chemo. 3 days of chemo with 3 weeks off and another 3 days. We just got the results back from her scan and the chemo did nothing. The tumor in her lung has actually grown a few millimeters. So now the oncologist says we are no longer looking for a cure but just to prolong her life. He is now suggesting Tarceva. Has anyone had any success with this drug? The coming winter scares me to death. Mom's lung function is pretty good right now and the doctor doesn't feel that her breathing would be the thing to kill her. More likely an infection. She seems to get bronchitis pretty badly each winter and it worries me that it might take her life this year.

    Need more hope! It's starting to fade fast.

    Eva

    Lori is referencing a great
    Lori is referencing a great website. I echo what she said. My cousin kept me safe throughout the cold and flu season by wearing med masks in public and using hand sanitizers. Hopefully the Tarceva will work for her.
  • dweb135
    dweb135 Member Posts: 6
    dennycee said:

    It took a couple weeks to
    It took a couple weeks to feel other side effects but everyone is different. My hair thinned a little but I kept most of it.

    lung cancer
    i am new to this site. I saw your blog about lung cancer. I was diagnosed with the same cancer. I went threw radiation 5 days a week for 6 weeks. It messed up my esophagus lost down to 97 pounds. Im scheduled for a scan this week to see how much chemo i need.
  • ToBeGolden
    ToBeGolden Member Posts: 695

    Small Cell Lung cancer
    I was 63 when I was diagnosed with Advanced small cell. They said it was considered advanced because I had 2 tumors (that looked like there was a giant pickle lying under my skin at the base of my neck on both sides of my throat. I was pumped with Cisplatin and Etoposide every three weeks for three consecutive days for six times. I was at one hospital that was too agrssive and very negative. My son found another place that offered a concer coordinator so after I had to be taken into chemo by wheel chair from the affects of the chemo.They also wanted to start chemo bc it had spread to lymph nodes.
    New place lessened the fluids (steroids) in chemo and I was drivinf myself after two days of chemo. No radiation until chemo all done. Too hard on a body. After third round of chemo, there was no tumors to be seen. Never found in lungs, they said they had moved from there. Whatever. I was told by 2nd Oncologist, my attitude was going to beat it.
    Didn't need radiation ...nothing to be seen but lasted for 9 treatments and wished I'd had none. It has been 6 yrs since last treatment. I juiced every day after done and never touch sugar as I was told ca feeds off of sugar. Please stay positive. Know they all (MD's) have to paint the darkest picture so in case. Your mom can have positive picture and I turned it over to my higher power and am still here. WE will run from it forever but, I refuse to give it any power over me and my son keeps reminding me to crawl out fo the black hole and fight positively. I did learn to take Nepogen instead of neulasta to replenish my blood count. Had to take procrit a couple of times. I drank a ton of water and drank green tea with a slice of fresh ginger to keep from throwing up so much. I forced to eat, even if it was a piece of toast.

    Shaved my head after two chemo's. I realized they gave me 3 days in a row then off for three wks and when you start to feel a little better, it is time to knock the cells back down. I thank my Naturopath for keeping me on track. He would not interfere with the poison treatments but the day of my last chemo, he started working with me and gave me all the stuff I had to take. Pau d' arco is amazing from Whole Foods. I order from online cheaper tho. made cute hats to wear as wigs made me feel worse. I smiled at everyone and acted like I was going to live forever.
    I wanted to find someone to talk to so bad but couldn't.
    Keep me posted. Good luck to you both. I did lose my mom when I was 35..........35 years ago, it stinks.

    New On This Road
    I've spent a lot of time fighting Head & Neck Cancer. The pathologist already has my vocal cords. However, stuff just showed up on my lungs. So I'm starting down this new road.

    Thanks for your story and tips. Love Whole Food Market. Rick.
  • Greensmythe
    Greensmythe Member Posts: 2

    New On This Road
    I've spent a lot of time fighting Head & Neck Cancer. The pathologist already has my vocal cords. However, stuff just showed up on my lungs. So I'm starting down this new road.

    Thanks for your story and tips. Love Whole Food Market. Rick.

    Just found out
    I just found out this week that I have a non small cell neoplasm- at least that is what I was told over the phone yesterday. I have my first appt with doctor on Monday at 8am- and am terrified- but after reading through all of these and regaining hope I think I can move forward.

    Five years ago, October 24, 2007, I underwent a craniotomony for a meningioma ( a baseball sized tumor on the left occipital lobe of my brain- it was benign and I have had a great recovery. I am grateful I had these past five years with my grandsons- and I am very hopeful after finding this group for hope. I really know very little at this point except what they did find after doing the lung biopsy on Wednesday. I do not know what stage, how large it is ,or anything. But, I do know I have already gotten a big bill from the hospital. I have not told anyone yet. I live alone, with my black lab, Betty, and although my daughter went with me and spent the night at the hospital and my son sat with me all day long during the lung biopsy procedure, I am having trouble with figuring out how to tell them. Also, my sister and mother who is alone now. My father died five years ago.

    I am just grateful I found some hope here- it has given me the strength to face whatever lies ahead.
  • dweb135
    dweb135 Member Posts: 6

    Just found out
    I just found out this week that I have a non small cell neoplasm- at least that is what I was told over the phone yesterday. I have my first appt with doctor on Monday at 8am- and am terrified- but after reading through all of these and regaining hope I think I can move forward.

    Five years ago, October 24, 2007, I underwent a craniotomony for a meningioma ( a baseball sized tumor on the left occipital lobe of my brain- it was benign and I have had a great recovery. I am grateful I had these past five years with my grandsons- and I am very hopeful after finding this group for hope. I really know very little at this point except what they did find after doing the lung biopsy on Wednesday. I do not know what stage, how large it is ,or anything. But, I do know I have already gotten a big bill from the hospital. I have not told anyone yet. I live alone, with my black lab, Betty, and although my daughter went with me and spent the night at the hospital and my son sat with me all day long during the lung biopsy procedure, I am having trouble with figuring out how to tell them. Also, my sister and mother who is alone now. My father died five years ago.

    I am just grateful I found some hope here- it has given me the strength to face whatever lies ahead.

    New too
    I also have lung cancer. I am terrified also. I found this site. Hopefully to find support from others who are battling this cancer too
  • dennycee
    dennycee Member Posts: 857 Member

    Just found out
    I just found out this week that I have a non small cell neoplasm- at least that is what I was told over the phone yesterday. I have my first appt with doctor on Monday at 8am- and am terrified- but after reading through all of these and regaining hope I think I can move forward.

    Five years ago, October 24, 2007, I underwent a craniotomony for a meningioma ( a baseball sized tumor on the left occipital lobe of my brain- it was benign and I have had a great recovery. I am grateful I had these past five years with my grandsons- and I am very hopeful after finding this group for hope. I really know very little at this point except what they did find after doing the lung biopsy on Wednesday. I do not know what stage, how large it is ,or anything. But, I do know I have already gotten a big bill from the hospital. I have not told anyone yet. I live alone, with my black lab, Betty, and although my daughter went with me and spent the night at the hospital and my son sat with me all day long during the lung biopsy procedure, I am having trouble with figuring out how to tell them. Also, my sister and mother who is alone now. My father died five years ago.

    I am just grateful I found some hope here- it has given me the strength to face whatever lies ahead.

    Greensmythe and Dweb
    Lung cancer is no longer a death sentence. There are many here who have survived ten, fifteen and twenty years with stage four cancer and mets. To research what you are going to need to know it is important to find out if it is small cell or non small cell lung cancer. If it is small cell is it limited (in one place) or extensive(metasticises). If non small cell (NSCLC), is it adenocarcinoma, squamous, large cell or one of the rarer ones. Perhaps it is a mets from another place. If it is a nsclc, ask them to make certain that they take a large enough sample with the biopsy that they can test it for mutations. The most important ones to test for are EGFR, ALK and ROS1. There are others but there are no targeted therapies for them yet.

    Greensmythe- when I was diagnosed I called the husband of one of my cousins and asked him to contact family for me. We are good friends but it was less emotional for me to talk to him. I put all my brother and sisters names on the HIPPA form so nurses could answer their questions and spare me till I was ready. Is that an option for you? What about a good friend that you trust?

    Dogs are good. Our dogs had me moving to feed them and put them out. It wasn't expected of me but I wanted to do it so that got me a bit of exercise. Also, petting them helped me focus on something besides being sick.

    I look forward to hearing more from both of you.
  • dweb135
    dweb135 Member Posts: 6

    Your mom's treatment plant is identical to mine +1
    I was diagnosed April 2010 at the age of 59 and staged 3B, mass on left side (high, in bronchus) and lymph nodes affected on both sides of my chest. They put me through exactly the same regimen as recommended for your mom. Let me get to the good news first: I got through the treatment with no side effects I couldn't handle (detail below), and have been NED and off medications of any kind since July 2010. I am following the same excercise program I did before diagnosis, including hiking up mountains at above 8,000 feet elevation, and with occasional ups and downs involving congestion, I've been feeling steadily better since treatment ended. Just last week I had a friend's mother, whom I've known for forty years, tell me I looked better than she'd ever seen me in my adult life (this woman is definitely not known for feel-good pronouncements), and looking back through my photo albums, I gotta say she's right, at least as regards the last five years.

    Long story short, even though the stats stink, at your mother's age and based on my results, I would say she should not even consider avoiding treatment. She CAN do this. Even if my next scan (Feb. 8) should turn up with bad news, I would have done the treatment. I would have done it twice over.

    Side effects and recommendations:
    ===================================
    (1) Burnt esophagus that made swallowing even plain water painful. This didn't hit me until relatively late in the treatment, maybe 3/4 of the way through. If her radiation pattern crosses the esophagus, this will probably happen. REC: Start eating smooth and frictionless foods right away, even before she needs to. It may delay onset.

    (2) Grinding fatigue. The radiation WILL do this to you; I don't know of anybody who's been an exception. "Hit the wall" period will probably start at about four weeks, maybe a little later. FYI, my profile pic was taken right about then, so you can function with some effort. REC: Rest as often as possible. Luckily, I was able to sleep like a baby at night, all the way through.

    (3) Nausea. I had only a hint of it a couple times. I still have a virtually full bottle of pills they gave me before starting treatment. REC: Take the pills when you need to. They've obviously made huge strides in this area.

    (4) Low cell counts. I had nothing that interrupted my treatment schedule.

    (5) Infection. I had none. STRONG REC: Stay the heck away from people as much as possible throughout the whole chemo regiment, so as to miminize chances of catching something.

    (6) Hair loss. The second round of etoposide will do it if the first didn't. Comes with the program. REC: Purchase cool head covering of choice.

    (7) Dehydration. Didn't happen to me, but I checked myself in on my own recognizance near the end of radiation to get my tank topped up with fluids, because I didn't think I was taking enough in owing to the roasted esophagus. Hour and a half in an easy chair; no big deal.


    I'm sure I've left something out, and feel free to ask any questions, but let me reemphasize that she CAN get through this in excellent shape. All the very best to your mom!

    Hi saw your response about
    Hi saw your response about your lung cancer. i am a newbee here. my cancer is stage three b just like what you described. I went threw thirty radiation treatments along with once a month chemo. I had my esophagus problem about four weeks after i started radiation. I was put in hospital for dehydration. Lost down to ninety seven pounds. Its been about eight weeks since i finished radiation. still having some issues with eating. I noticied i get a lot of burning sensation and belching too. Did you have that?
  • newpatient503
    newpatient503 Member Posts: 2
    the same diagnosis

    Hello Eva!

    My husband has the same diagnosis and we have to start treatment next week. Please can you tell us how your mom

    went thru this ,what side effects did she experience?

     

  • newpatient503
    newpatient503 Member Posts: 2
    deltafun said:

    Treatment plan
    I wanted to post more info this morning but had a problem with the website. FYI My treatment plan was 37 rounds of radiation and 8 chemo treatments carbo/Taxol. There were times that I felt I didn't want to live like this but today I am feeling great. Everyone on this site knows what you are going through and how much your life changes once you are told you have cancer. They will be here for you when you need them! I was diganosed with stage 3b None small cell lung cancer.

    same diagnosis

    Hello!

    my husband was diagnosed last week and we will start treatment next week. Would you please let us know what to expect (side effects) and if it is possible to avoid some.

     

  • denny621
    denny621 Member Posts: 4

    the same diagnosis

    Hello Eva!

    My husband has the same diagnosis and we have to start treatment next week. Please can you tell us how your mom

    went thru this ,what side effects did she experience?

     

    brother with 3b nsclc

    My brother as well is 31yrs diagnosed with the same. He will be starting treatment next week. 3 day on 3 week off Cisplatin and Etoposide. Just hope for the best and take it one day at a time. I was dwelling on statistics for the past few weeks but its just a number. If theres a will theres a WAY! Hope all is well, I will update more after my brother goes thru treatment. Good luck with everything and I hope everything turns out fine with your husband.

  • dennycee
    dennycee Member Posts: 857 Member

    same diagnosis

    Hello!

    my husband was diagnosed last week and we will start treatment next week. Would you please let us know what to expect (side effects) and if it is possible to avoid some.

     

    Welcome newpatient503!

    Please consider starting a new thread tto ask your question.  Buried in the middle like this will make it hard to find you, your questions and responses.  also. Please clarify for us if she is looking for info about cisplatin /etopicide or Tarceva thanks.