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Stage 3B Non Small Cell Lung Cancer - Need hope

ecross23
Posts: 3
Joined: Jan 2012

My mom started treatment today for stage 3B non-small cell lung cancer. Here's her background. December 27th she told us they found a golf ball size tumor in her right lung. They ordered a chest x-ray for a really bad cough. The Pet Scan came back ok but during her biopsy they found that it had spread to the lymph nodes on both sides of the body. So starting today she began treatment. 6 weeks of radiation 5 days a week. At the same time she is doing chemo. Mondays - Cisplatin and Etoposide, then Tuesday thru Friday Etoposide and the following Monday both drugs. 3 weeks off from chemo and one more cycle of chemo.

The statistics are terrible for 3B. My mom is 66 years old and I worry so much about her not making it. I am 35 years old and way too young to lose my mother. I guess I'm just looking for some hope and great success stories. My father has become depressed as my mom is his life. He wonders if they should even fight if without treatment she would have 9 to 12 months and with treatment she could still only live a year. They watched my mom's cousin go thru hell and still die within a year from lung cancer.

Anyone go thru a similar treatment plan? What side effects did you experience? Day 1 complete and she felt ok after chemo. How long did it take for you to feel effects from treatment?

Thanks

Eva

dennycee
Posts: 667
Joined: Mar 2011

Your mom's treatment plan is identical to mine. The differences are in description of disease. My mass was larger and I had mets to the other lung. You do not mention what type of cancer she has, mine is adenocarcinoma. It has been more than 15 months and if you met me you would not know that I have stage 4 cancer. Please ignore those numbers you saw. they are based on numbers that are several years old.

There are 2 other websites that I would like to recommend. The first is inspire.com, there you will find blogs by caretakers, family members, survivors and current patients. You can specify whether you have an opportunity to sign up for blogs that are pertinent to individuals with stage 3 lung cancer. There are blogs for every possible type of cancer and every stage. One of the regular contributors was dx with stage 4 lung cancer 15 years ago. The 2nd is cancergrace.org. This site is monitored by oncologists who answer questions about treatment or the disease process. I look at all 3 sites daily.

Make sure your mom stays hydrated and takes her steroid meds as scheduled during chemo to keep side effects down. The only problem I had with chemo came when I didn't take my emend but they are putting it in the chemo now so that should be ok. The combined chemo/radiation will make her very tired for a while. She will probably experience pain or irritation in her esophagus. There have been so many advances in cancer care in the last couple of years that the cure is rarely worse than the disease now. There is more to tell you but I must turn in now.

brandyroses
Posts: 4
Joined: Jul 2012

Thank you for your info and hope!

dennycee
Posts: 667
Joined: Mar 2011

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.

dweb135
Posts: 6
Joined: Oct 2012

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.

Ex_Rock_n_Roller's picture
Ex_Rock_n_Roller
Posts: 269
Joined: Mar 2011

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!

AlanRinHBG
Posts: 120
Joined: May 2011

I also had exact program as your mother and R+R. I was stage 4 and tumor was 3 times that size. I've been clear for over 2 years. I would add that a big glob of honey right before radiation helped me alot with the throat pain. I was 58 at dx. She'll get through it.

brandyroses
Posts: 4
Joined: Jul 2012

Thanks 4 your info. Feel so alone being caregiver!

dweb135
Posts: 6
Joined: Oct 2012

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?

Dan620
Posts: 213
Joined: Dec 2009

I was 1 month short of 66 years old May 2008 when dx with 3B NSCLC left lung and lymph nodes both sides. I had chemo 4 sessions once every 3 weeks (taxol/carbo) and radiation 5 days a week for 7 weeks, last treatments was August 2008. Burnt esophagus from rads was my worse side effect (not everyone gets this) only water i could drink was spring water (no floride) 2 weeks at end of treatments is when it hit me hard with really bad fatigue, this lasted about 3 weeks. It will be 4 years this may and i am doing very, very well. Ct-scans or x-rays every 3 months since. Stay postive and stay with the treatments.... Wishing your Mom and family the best..... Dan

dennycee
Posts: 667
Joined: Mar 2011

So glad X-R-R got back to you so fast. I wanted to go over some of the potential problems but ran out of time. I can't really add much to what he wrote, I would like to emphasize how important it is to keep hydrated. I kept a water bottle on either side of my bed in case I was too tired to turn over (yes there were some days during treatment when I was that tired). Also, the decadron made me very hungry so I kept snacks near the bed that were soft and had a high water content (fresh fruit or a cup of canned peaches or fruit cocktail). Eating 5 or 6 small meals a day really helped. I was truly fortunate enough to have 4 rounds of chemo and keep my hair!

One other thing- if your mom has osteopenia or osteoporosis, get her on fosamax or something similar as I had some broken bones due to osteo. Steroids, chemo & radiation can be very hard on bones.

Nothing has stopped me from getting back to the business of living. I have traveled more than I ever did. I have taken up pottery, volunteer at community activities and I am searching for a part time job.

ColoradoDani's picture
ColoradoDani
Posts: 65
Joined: Sep 2011

Well, it's hard to add any more to all this great advice, but my husband was diagnosed stage 3B a year ago. He's NED and went skiing today. He, I and our sons (13 and 6 years old) are living full, active lives--TOGETHER. He had the exact same treatment as Ex Rock n roller and the chemo and radiation was totally worth it. Sure, there's total anxiety with scans, etc. but he's here, having fun, with us, and we'll take that for as long we can.

scaccobunnel739
Posts: 1
Joined: Jan 2012

Yes, i agree with you. Believe yourself. - Normal Body Temperature

z's picture
z
Posts: 1258
Joined: May 2009

deltafun from the inspire web site posted this recently. I don't know what type of cancer. There is a lot of hope on the Inspire web site, so I visit both CSN and Inspire. If you go to inspire you can read deltafuns profile and see what type of tx she had as it relates to your moms cancer. I hope this helps. Lori

We are still in shock. We met with my oncologist yesterday to review the results of my Pet scan, he told me that there is NED. Wow now that was a shocker. I was diagnosed last March with stage 3b lung cancer and had a 9.6cm tumor on my left lung and now it's gone. There is hope, I didn';t think so at first but reading all the post on this site gave me hope.

Thank you all!

deltafun's picture
deltafun
Posts: 50
Joined: Apr 2011

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

deltafun's picture
deltafun
Posts: 50
Joined: Apr 2011

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.

z's picture
z
Posts: 1258
Joined: May 2009

Great news on your scan! I wish you continued great news! This is why I come to both Inspire and CSN. I didn't know you were on CSN and I'm so glad you responded, thank you, Lori

ecross23
Posts: 3
Joined: Jan 2012

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

beatallted's picture
beatallted
Posts: 4
Joined: Jan 2006

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.

beatallted's picture
beatallted
Posts: 4
Joined: Jan 2006

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.

ecross23
Posts: 3
Joined: Jan 2012

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's picture
z
Posts: 1258
Joined: May 2009

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
Posts: 667
Joined: Mar 2011

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.

newpatient503
Posts: 2
Joined: Jan 2013

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.

 

dennycee
Posts: 667
Joined: Mar 2011

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.  

MzRushing
Posts: 1
Joined: Aug 2012

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.

positivewife
Posts: 21
Joined: Feb 2012

My husband has stage 3B lung cancer in his lyump nodes between the two lungs. He has had 35 radiation treatments and 12 chemo treatments.He has lost his hair and gets tired fast but considering everything he is doing well.My husband was on oxygen 24/7 before he got lung cancer. He has COPD and cannot have any surgery.He is very positive and is a fighter.He is 68 years old and does everything his doctors tell him to do.We have found diet helps with a lot of the side effects.He does not eat anything with spice in it and no soda.Everything he drinks is decaff.Six small meals are better than three large meals.He stays out of large groups and is not around anyone sick.The most important thing a caregiver can do is stay positive so your love one can stay postive.He has had lung cancer for five months and his lyump nodes have gone down half since he started his treatment. He has another Ct scan next week and we hope they have gone down more.I pray every day for a cure but until than you must fight to beat cancer.Good luck!

hebadekei
Posts: 2
Joined: Jul 2012

Hi, about your husband, how's going? Hope he is recovering very well, because this is the only hope...we need to find some real model to make us believe we can fight against the cancer.
- normal body temperature

Jen87
Posts: 1
Joined: Jul 2012

Hi everyone, thank you for posting your inspiring stories online. I live in australia and im 24 yrs old. i have beautiful girls and about to marry their dad, i thought life was going great until my mums was diagnosed 5 weeks ago with stage 3b lung cancer which had spread to her lymph nodes in her broncoscope (airways) i have googled just about every page available online and the prognosis on all these pages are not comforting what so ever.
i had little hope that my mum would last 12 months with the agressive growth she has. its an 8cm groth in her chest and i really was giving up hope that she would get better.
her treatment was started straight away with 5 days radiation then a week later started gem carbo chemotherapy. she has 12 weeks of chemo with breaks between some weeks. im not sure what exactly this is for but now im thinking it may shrink and stop the growing after reading all of your stories. i am curious as to why she is not doing chemo and radiation as some of u have.. i wonder if they are doing enough just with the chemo.
when she was in hospital she was having trouble with her heart as well,she would have panic attacks and cause her to have a pulse of around 190 which was very worrying.
she is very weak and off balance with her legs. she gets the chills and is today unable to speak really, has lost her voice. shes got a lot of bruising and a large lump on her arm which we are having checked tomorrow at her follow up appointment.
i really dont know what to think or believe anymore and sometimes i find myself already wishing she didnt have to go through this and was thinking stop the treatment etc.. i feel terrible for thinking it and feel like im giving up but cant see the light at the end of the tunnel yet. she has been sick for at least 12 months when 12 months ago she got pheumonia and never got over it then shortness of breath and told she had lung disease and copd, then when she was discharged from hospital 8 weeks ago was told she would clear up and back in 5 weeks ago unable to breath when they decided to take it seriously and do some tests..
i am caring for mum 24/7 and feel like i cant cope but know i have to do it and want to be there for her. im to young to lose my mum and cant imagine life without her.
sorry for the long story
and i wish u all the very best

beatallted's picture
beatallted
Posts: 4
Joined: Jan 2006

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.

ToBeGolden's picture
ToBeGolden
Posts: 697
Joined: Aug 2010

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
Posts: 2
Joined: Nov 2012

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
Posts: 6
Joined: Oct 2012

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
Posts: 667
Joined: Mar 2011

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.

newpatient503
Posts: 2
Joined: Jan 2013

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?

 

denny621
Posts: 4
Joined: Jan 2013

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.

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