My mom, who is 63, was diagnosed with small lung cancer yesterday. We (her four daughters) are in shock and horror. It's like a nightmare. We are 27,29, 33, and 37. She smoked for years, but stopped ten years ago. But it doesn't matter anyway.

Does ANYONE have any success or hope stories for us?? They gave her four months without treatment, a year or two with.

Anyone with experience? We welcome it all.

Thank you.

i am so sorry to hear about you mom. my mom was diagnosed on june 14th..one of the worst day of my life. I know the shock of it and how you feel. Get ready for a battle,stay strong and positive.Look at the good stories and remember every case is different.If you have questions im here...this board has been a great help to me.

Thanks for the advice. We will try. I just was hoping someone had some hope for me.

Hi there - I am new to this site but read your message regarding your Mum & just wanted to tell you of my experiences with my Mum. She is 62, diagnosed last September with the same & like you, was petrified of losing her. She underwent intense radiotherapy (3 times/day for 12 days). The last 13/14 months have been HELL through worry and the un-known, however today she went back to the hospital and was told that her tumour has "almost disappeared"!! I never realised that this could be possible, but she is proof and I just hope that your Mum can find treatment that will equally give her the best chance of survival - try really hard to remain positive, although that is easier said than done, but you must be strong.

Wishing you all the luck in the world - I hope this information will give you some hope. xxxx

You did give me hope! I'm going to read this to my mother. How wonderful. Thank you. Thank you. I don't want false hope, but some real hope or something to look forward to is getting us through this.

I appreciate you taking the time to respond. Best of luck and hope to your mother, too. xo.

Hi-
You only mentioned SCLC and not if it is extensive or not. Is the cancer isolated? My husband has SCLC and was not given that long to live without treatment...2 to 6 months and it is now 17 months. (not an easy 17 months, but some beautiful times he had with our boys and know he would not trade the pain he went thru to see them smile and enjoy time with him) It is not an easy treatment so be prepared, but if your mom is determined then let her fight! Ask questions and ask more questions and do a lot of research. You also need to like your doctor and trust them. My husband has outlived what the doctors had told him and tell your mom never to go by those time frames as everyone is different.
Keep us posted and I will help answer any questions you have. There are not that many people on the posting board compared with SCLC, not sure why. The only problem with SCLC is that it is aggressive, but will respond initially to chemo. My husband is on his 4th line of chemo, but in a few weeks he will have his last treatment as the doctor said it is getting too hard on his body and need to let him rest. (otherwise the chemo can kill you) The chances are slim that it worked at all, but this will be the 2nd Christmas with cancer and it makes him so happy he can spend yet another Christmas with the boys.
You take care and prayers headed your way,
Kim

HI, I am very sorry to hear about your mom. Years ago my mom had the same diagnosis. She took the chemo which gave us extra time with her. In the end when she said no more chemo they gave her one month to live she lived almost five months. Please keep us posted. May I ask, what were your mom's symptoms. how was it discovered?

She had this tiny bit of wheezing. She had a lung xray which showed the mass (3 cm) and we thought it was definitely nsclc, but were shocked to hear it was the other.

We are so sad and sick with fear. She is in otherwise good health, and is quite a character, so everything she says makes us laugh (then cry). My sister had cancer five years ago and we just made it to the "all clear" stage, now this...

Of course, we're still in the "Maybe it will be okay" stage, which seems naive and impossible, but it's too hard to actually face the other.

Thanks for listening.

I know how terrible this is!! I was 21 when my mom was diagnosed and 23 when she died. I can tell you we did have many great times and memories through out it. I had such peace and closure by the time she passed because we said so much to each other that we might not have otherwise said. We all laughed and cried and friends from all over came and visited her when she was terminal. We were all so touched by the help and love of so many we didn't know all that well. It meant the world to my mom that so many visited, sent cards etc. She was quite remarkable...when they gave her one month to live she still kept busy, sewing and being my mom, and like I said, she lived five more months. Don't give up hope and enjoy each day.

My mom has NSCLC stage IV and thou she has now stopped chemo and is in hospice she made it longer the the doctors gave her. Six months with no treatment maybe a year with treatment, she was diagnosed in July 2004. SCLC and NCSLC are quite different. SCLC is more aggressive but it also responds better to chemo. NSCLC tends to be slower growing but does not respond as well to chemo. I really do not know if I would choose to have one over the other.

Be ready for a real roller coaster ride as your emotions are going to go up and down and all over the place. Cherish the good times and hold strong during the bad times.

During Chemo be on the alert for infections and sometimes it will just be a low grade fever and lack of energy that points towards infection . My mom had both a pneumonia and urinary tract infection after her first line chemo and it took my pressuring her doctor to get the tests done to find both as he just wanted to write it off to the cancer. Untreated she may have become septic and died and then become another 6 month stastic.Don't be afraid to question the doctors as like you they are human and unlike you they do not know your mom and what is normal for her. If you feel something is not right listen to that inner voice as it is usually right.

Someone needs to be your mom's advocate and go to doctors appointments with her so there is a second set of ears and a second voice to ask questions. Learn as much as you can about the cancer and treatments.

Watch out for dehydration and malnutrition during treatment as some chemo changes the way food tastes and others just cause one to not feel hungry. If this happens small snacks and small sips of water throughout the day can help. My mom's new favotite is Ensure mixed with a chocolate shake from Carl's Jr. During treatment we tried to avoid sugar as much as possible but sometimes when it is all you can get into them you need to do it as Malnutrition is a big killer for people with cancer. Learn about Nutrition for cancer patient's, A good book is Beating Cancer with Nutrition by Patrick Quillin.

Most important do not give up hope.In our case the focus of hope has shifted as my mom is now in hospice care but it is still hope. Believe in the power of prayer and do not be afraid to ask others for prayers as research as shown it does help.

"Of course, we're still in the "Maybe it will be okay" stage, which seems naive and impossible, but it's too hard to actually face the other" My friend that had Hodgkins Lymphoma made me understand it is ok to live in denial while you deal with cancer as for some like my friend and my mom it was the only way they could cope and survive.We all have different methods of survival for me it is learning as much as I can about the disease and treatment while my mom wanted to know as little as possible.


Come her and ask as many questions as you like and know there are no stupid questions or come just to vent .All of us here do understand as we have been there or are currently there. I will add your mom and your family to my prayers . Janmarie

JanMarie, I so appreciate your long note. I will keep hope, and keep coming here. Thanks for your support and advice.

This is the first time I have posted although I have been following the posts for a year. I think the best thing you can do for your mother is to educate yourself about her disease. To often as I have seen in my own family as with my sisters death at 47 from nsclc and my mil battle with sclc the lack of knowledge of their cancers to often gave them false hope and a lack of a good quality of life. The plan truth is there is no cure for sclc. The Drs themsleves have no knowledge as to why some people live longer with it than others ,but its all they have. Yes I may sound negative ,but I have seen Drs give treatment to patients instead of telling them the truth and allowing them to make up their own minds as how they want to be treated. I do have a background in medicine so I know most patients with extensive sclc would live just as well with pallative care and still be enjoying their lives . I donot know why the medical community has such a hard time with allowing the patients to decide their own informed fate. I am very sorry for you ,your sister and most of all your mother. I hope you will have many more months together whatever she decides as to how to spend the rest of her life.

Well, I think we're listening to doctors, but getting our own information independently as well. Even thought they throw out these depressing statistics, we were hoping to hear from some people who have defied the odds, or beat their expectations. Not to form false hope but to get inspiration. We realize what we are up against, but we want to believe in the power of medicine, prayer, and postitive thinking, too. We have to. We all need her to get through this.

hope is definitely something you need in this battle. i know there are people that do beat the disease. prayer is very powerful and so is knowledge. you are doing the right thing by searching for all of these. you cant win the battle without a positive attitude. there are still many good days in ones life even after a diagnosis like this. i have stage 4 lung cancer and they tell me no cure . i dont care . im still living my life to the fullest. we all are only for a short time. it is what you do with the time you have and how you effect the ones around you. good luck to you and your family you are on the right track. god bless and i hope you find the inspiration you need.:wave:

Hello, I am 57, was diagnosed with SCLC in April 2005, did chemo and radiation and have had three 'clean' scans to date. I asked the Lord from day one to give me more time than the doctors were predicting and He has answered my prayers, along with all the prayers from so many in our area. I was told, at best, that I have a 50% chance of making it five years. Two down and three to go. I try to be thankful each day for waking up. I am adding your Mom and you and your family to my prayers each day. Yes, I believe in miracles and ask our Father each day to keep holding my hand. God bless and keep you. Love from Ky., Pat

How did you feel during treatment? I mean, obviously not great, but was the quality of your life so compromised that you couldn't really carry on with daily activities? We don't know what to expect.

I am so happy your scans are clean. You are an inspiration to me and my family.

I was wondering if anyone has had experience with the difference between extensive and limited disease. I would love to hear stories on both sidesk, and how the prognosis is changed between the two, if at all. We're about to hear which stage Mom is in, and I'm wondering if it even really matters.

I am so sorry to hear about your Mom. I am happy you have found this forum, there are many caring people here, and although I don't post much myself, just reading these messages sometimes just gets me thru a rough day.
Be prepared as others have mentioned for a roller coaster ride of emotions...but sometimes as horrible as this disease is, it can bring people together to share these times as a family. I wish you and your mom luck.
KYGal, it is wonderful to hear that you are without cancer!! It definately gives hope that my dad may hopefully be the same one day.

We learned that the cancer is in her liver and her rib bones. They will not do radiation, just chemo. They did a scan of her brain but we don't have the results of that just yet.

The doctor says the point of chemo is to buy her about 12 months. Does anyone know if the chemo will actually make her feel better (not during the treatment but in the long run)? Right now (pre chemo) she is breathless, exhausted, headachey, so tired she sleeps four hours a day in naps, plus 12 at night. I mean, if the chemo shrinks the tumors, won't she feel better...? Get some of her stamina back?

Just hoping there will be some good days to look forward to. Does anyone have experience with this? I could take a break from crying.

Thanks.

My husband has Extensive SCLC and has outlived what the doctor's had thought and has never done any radiation and even has 50 lesions/mets in the brain and has the cancer obviously in his lungs, bones, liver, spleen and adrenal and lymph and sure there is somewhere else I did not mention...but to give you an idea it has been 18 months. There have been some bad times, but there have been some beautiful times too. On his first chemo he responded quite well and got a 30% reduction and felt quite well for 2 1/2 months. My husband is a very determined man and yes things are looking rather gloomy now, but we never thought he would be here for yet another holiday! He asked me yesterday what I wanted for Christmas and I told him I already have it...I told him I am so blessed to have him around another Holiday for the boys. We never thought he would be here this time last year so even though they gave your mom 12 months...you just don't know. Everyone is different, but don't get discouraged if the chemo knocks her down flat on her back! My husband was hospitalized twice, but bounced back. I pray your mom can achieve some quality and enjoy life. Be strong for your mom as she needs you! Keep us posted.
Prayers,
Kim

Thank you so much, Kimslos. That does give me hope. Of course, my heart sinks with the thought of 18 months looking like a great amount of time, but it's all about coming to terms with the reality of this diagnosis and what life will hold for us from here on out. We're all still in a surreal place, a state of shock...always thought she'd be here forever. It feels very wrong to have her in poor health now, and to have to lose her.

But I'm so happy to hear your husband is doing well (or has way outlived doctor's expectations).

I hope his spirits are good. Thank you for lifting mine.

Hi-
Oh, honestlyto thank me was not necessary. I feel your pain and understand the numbness and the shock. Yes, it is about coming to terms with the diagnosis, which we all would love to run from in hopes that it would be behind us, but no such luck. I hope you can have some very special times with your mom on her good days. Keep smiling for your mom and make her proud of how strong you are during this tough time.
I will add your mom and you to my ever growing list.
Need to get my son in bed.
Kim

If anyone can tell me anything about the chemo treatments for SCLC, I would appreciate it. Mom's brain and stomach were clear, but there's cancer in the liver and ribs. She starts treatment tomorrow. Maybe I should start a new thread for this, but if anyone has chemo advice, I welcome it. She will have the Cisplatin and another drug for three days, then in three weeks, repeats.

Thanks and hugs to all.

Is it Cisplatin and Etopside? That is a very common combo for SCLC...find out and get on the Internet and you can look up what to expect. I remember the worst thing my husband experienced was his taste buds were so messed up. I had to to go the store and bought honestly 20 different types of drinks to see if he could drink anything. I also had to do that with water and found he could only drink the Sparkletts purified drinking water and no others. He was also very tired and fatigued. But, remember everyone is so different so you never know what to expect but I looked up all the side effects on the Internet. Oh, I would also make him pot and after pot of homemade chicken soup as it somehow soothed him and he could tolerate the taste. He ate a lot of other soups too but that one the most.
Hope some of that helps....
Prayers,
Kim

Great idea about the soup! And the taste bud thing. Mom is so tired already, I can't imagine it will be but so much worse...she takes 2-4 hour naps a day and isn't even having treatment.

I will plan on making soup this weekend when I go see her. Thanks for the tip.

My husband had limited sclc. They gave him chemo and radiation together. The tumor shrunk to nothing and never came back. Unfortunately it moved around and finally went to his brain which finally took him. But we got to be together for 2 1/2 years before it won. Be grateful for every day and love each other as much as you can. It is the only thing holding me together this time of year. He died last Feb. 24th so it has almost been a year. Hang in there and make her want to live. You can help her get through this, honey.

I'm so sorry about your husband. I am glad you had some good time with him. Mom's cancer is not so far in her brain, but it is in her liver. So it's extensive. We are so sad. It feels like a bad dream.

Thank you for writing here, and I hope you have happy holidays balanced with many memories of your time together.

My 75-year old mother was diagnosed with SCLC on 12/11/06. This week we met with her oncology Dr. and her treatment is going to be an agressive combination of chemo and radiation - approximately 3.5 months. With just learning about the diagnosis - listening to all the treatment and possible side affects of the treatments it surely seems overwhelming at this time. We are very encouraged as she only has to very small nodules in her right lung! Wondering if you can recommend any reading material for my Mom that would help her as well as family members. I have begun journaling - both to capture all the information from the Dr.'s as well as questions and feelings. I just signed up to this message board - and it surely looks like a great place to get and share information and thoughts.
L

I don't really know what reading would be helpful other than just getting the facts from reputable online sites.

The doctor my mother is going to at the Massey Cancer Institute in Richmond has one of the five year survivors under his care. That's right, the 2% that live on with this disease and fight on to live way longer than they expect, and he has treated her going on her fifth year with SCLC (extended, too!). While I realize it's important to be realistic, there is something to be said for hope and optimism, too. There are some people who outlive their diagnosis. And reading their stories is inspirational. I've even found many good stories on this site--not just "we beat it" but "we're still around, trying to beat it" or "our outcome was better than expected." Small joys, small miracles. They are out there. Best to you and yours.

Hi,
My dad is 62, he quit smoking over twenty years ago. He lives with me, he had what should have been life ending motorcycle accident seven years ago, a lot of damage. I just can't understand why he survived such a horific accident only to have to deal with such an awful situation only a few years later. They said it is stage four non small cell lung cancer, non operable... we have completed four of thirteen scheduled radiation treatments. He had a port put in last week and Monday is the first chemo treatment. He is so fragile and it tears me up to see him suffer so. I am allowing no emotion what so ever other than love and of course concern but I refuse to be upset or tragic. If he see's me troubled at all the impact would hinder his ability to deal with this as well as he is. He goes from being pretty aware of the severity of finality of this to the occassional comment that suggests he has some degree of belief that he can live with this for a number of years. I don't know, the Dr's haven't suggested a time frame to me so I just let him express whatever it is that he is feeling at the time. This is the hardest thing I have ever dealt with in my life time.. I am so afraid of saying the wrong thing or not saying something when maybe I should, I guess there are no right or wrong answers for this .... Dad has a very large family, 13 brothers and sisters and last week a group were going to "drop in" on him and I threw a fit. I am living this day to day, he had a hard night the night before, I don't know my aunts and uncles and I was at work that day. I had told the one aunt the week before to contact me to arrange a visit. That has happened with a couple of people and I'm sure some think I am just awful but they need to respect my home and the fact that I am the one carring for my father by my self and they need to go through me. He has told them that ,... are any of you having issues with family members? It is just such a sense of being on the point of a spinning top that never slows down..
Sandra

Thanks for the advice. We will try. I just was hoping someone had some hope for me.
I just found out some information about new technology in treating lung cancer. Go to the website cyberknifemiami. My mom was just diagnosed with lung cancer, I can't seem to overcome the shock but when I read about this I feel there is some hope. I am going to make an appt. for her as soon as possible. Read about it, it will make you feel better. Good luck to you, I will let you know how it works out. Jodi

Thanks for the tip. There is also a Tomotherapy site that give hope. Unfortunately, my mother is not a candidate for radiation. They usually only use that on limited stage, and Mom's is extensive.

She lost all her hair. We had a nice holiday, but it's so hard, sometimes I can't bear it.

Does anyone know anything about extreme breathlessness? She can't seem to catch her breath, but is in her second round of chemo and is otherwise feeling pretty good. I mean, I realize it's lung cancer, but the breathlessness has gotten worse and worse since she started treatment.

Thanks to all.

Thanks for the tip. There is also a Tomotherapy site that give hope. Unfortunately, my mother is not a candidate for radiation. They usually only use that on limited stage, and Mom's is extensive.

She lost all her hair. We had a nice holiday, but it's so hard, sometimes I can't bear it.

Does anyone know anything about extreme breathlessness? She can't seem to catch her breath, but is in her second round of chemo and is otherwise feeling pretty good. I mean, I realize it's lung cancer, but the breathlessness has gotten worse and worse since she started treatment.

Thanks to all.
I WONDER IF THE CHEMO IS DOING THAT, CAUSE MY MOM STARTED HER FIRST CHEMO ON WEDNESDAY AND HER COUGH GOT WORSE THE NEXT DAY AND STILL SHE IS COUGHING SO BAD AND SHORT OF BREATH TOO. MY HEART BREAKS WHEN I SPEAK TO HER CAUSE SHE SOUNDS LIKE SHE ISNT GETTING ENOUGH AIR. DOES ANYONE KNOW IF CHEMO CAN DO THIS. ANYONE WITH INFORMATION ABOUT THIS WILL BE APPRECIATED.....

Unfortunately, they think my Mom's breathlessness is caused by a tumor that has begun to wrap itself around her trachea. Her chemo did not do all that we hoped; some places it shrunk, and others it spread. They are doing radiation on her tumor to help clear her airway (her lung is collapsed) and hope that will bring her some relief.

Sometimes breathlessness is a side effect of chemo, sometimes it is anxiety, sometimes it is cancer. I hope it's a side effect for your mom.

We are so devestated the chemo, which has zapped her very quality of life, isn't helping to prolong it. The doctors reiteriterated that we are still fighting here, not giving in to this disease, but sometimes, it seems so very bleak. I need her here so much, and every day seems wrong and long and I wish so much I could go back to before and appreciate the normalcy of my days. Sigh.

Just an update: Mom was admitted to the hospital. This horrible, aggressive cancer has worked so quickly, even though they said a year, it's been nine weeks, they're not sure they can do anything but make her comfortable. I'm taking a leave of absence from work. I'm sick with dread and grief. But wanted to thank you all for your thoughts and support during this awful time. You have all written such thoughtful notes, and I have read all of your stories with hope and interest. I will continue to think of all of you and wish you the best in your battles with this terrifying illness.

With love,
Courtenay

:( Im so sorry for everything you are going through.I remember when it got to the point of just making my mom comfortable.it is such a hard thing to deal with and see.i dont really know what to say i just wanted you to know i have been thinking about you.
vicky