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Small Cell Lung Cancer

bugaboo24
Posts: 5
Joined: Mar 2006

Hi everyone, this is my first time posting a message here so please bare with me. I was diagnosed with SCLC (limited to my right lung) in October of 2004 and went through Chemo and radiation and have been cancer free now since my treatment ended in April of 2005, so for 1 year now. I would like to talk with or hear from others that have Small Cell Lung Cancer. Everything I read is so grim. I am only 45 years old and have two small children ages 9 and 10 and I find myself so scared all the time that the cancer will come back. Is this normal?? Does anyone survive this for the long term?? Does the anxiety ever go away? I am now scheduled to start Prophylactic Cranial Irradiation (PCI) to try and prevent any brain metastasis. If anyone knows anything about PCI, I would sure like to hear it. Also, as a result of my chemo I have a pretty severe case of Peripheral Neuropathy if anyone has any information on this I welcome it also. Thanks so much for listening.
Lisa

reinstones1's picture
reinstones1
Posts: 92
Joined: Feb 2006

Hi Lisa-- welcome to this board. I don't know anything specific about SCLC, but my Mom was diagnosed with NSCLC in December.

You are already a survivor for 18 months-- that's amazing, and congratulations. You can be an inspiration to many of us here.

You're right, everything you read about lung cancer is pretty grim, which is why most of us here will caution you about seeking (or believing) "long-term prognoses". Everyone's different. Nothing's absolute. But you're living proof that things CAN and DO go well for some cancer patients!

I wish you luck with the PCI-- I will have you and your family in my thoughts and prayers, and hope that you will tolerate the procedures well.

bugaboo24
Posts: 5
Joined: Mar 2006

Hi, thank you for your well wishes, I really do appreciate it. I hope your mom is doing well and I will keep her in my thoughts and prayers also.

Lisa

michaelcie
Posts: 133
Joined: Nov 2001

Hi Lisa, I also have the neuropathy in my hands, arms, legs and feet. My oncologist tried to ignore my complaints but i insisted and she finally admitted , it was from the chemo. I was told by her to take the B-complex vitamins, and also was given nuerontin, but it didn't help me too much. I was told that the neuropathy was supposed to go away within a few months, but I am four years out last february and still have it as bad as ever. I guess this is a side effect I must learn to live with. I also have pain in my chest , front to rear and is constant, I guess, this is from the biopsy , radiation or who knows what(lmao), it is there always. I guess is just part of the treatment we have gone thru. Well , again , I hope this helps you some in your questions, be strong and listen to your body and never give in. Huggs Mike

bugaboo24
Posts: 5
Joined: Mar 2006

Hi Mike, thanks for the info. Not what I wanted to hear but I kind of figured since I have had the neuropathy for over a year now that odds are I'm stuck with it. My oncologist also told me that it would go away, he said 6 months to a year. I took nuerontin for a while too, but didn't seem to do much. However, I do take take the B vitamins and I'll tell you I think it has helped some, its not gone by along shot but I've been taking B1, B2 & B6 100mg of each 3 times a day and B12 500mcg 3 times a day. I don't know how bad yours is but I can't even walk in the morning. It's just very frustrating, but I am still here and very thankful for that! Thanks again! Lisa

AJL
Posts: 13
Joined: Feb 2004

Hi Lisa,
My name is Andy and like you I was diagnosed with limited small cell lung cancer on my left lung back on Oct. 2001. I was 44 years old with two teenager when I received the bad news. It look like you're having the same emotional rollercoaster that I went through. I received chemo and radiation for the first treatment but the tumor grew back after 4 month after the treatment was over and was told It was incurable. I started the second round of chemo right after that and this time the chemo worked. The tumor shrank and have been asleep ever since. I aslo had irradiation to my brain for preventive measure. As far as neuropathy that part of the side affect from the chemo treatment.

We have a lot in common and what you're going though now, I been there and done that. This coming Oct will be 5 years for me.

You're the fist person I ever heard from that have the same type of cancer I have. As you can guess by now I'm 48 now, so there's always hope for all of us.

If you want to talk some more please feel free to call me at andylee57@yahoo.com

Andy

Kerstin
Posts: 9
Joined: May 2006

Hi Andy, 3 weeks ago I found out that I have small cell lung cancer, and you know how I felt from here on, I am so glad to hear that there are people out there alive and doing well, I am so scared, I started Chemo already, will start radiation next week...I wish you all the luck in the world. Kerstin

AJL
Posts: 13
Joined: Feb 2004

Hi Kerstin, I'm sorry to hear about your diganosis. I know it will be very difficult for you when you start radiation with chemo treatment at the same time. Try to stay positive and upbeat. I was also scared but after the initial shock, I just told myself the hell with it I'm not ready to go. I have many thing I haven't done yet, so lets rock and roll. As you go through the treatment try to go outside as much as you can. I know it will be hard but try not to dwell on it. I have the up most confidant you will beat this cancer and join the many many growing rank of cancer survivor. If you feel you need to talk someone as you going through the treatment just give me a call.

Andy

nipcat's picture
nipcat
Posts: 7
Joined: Jun 2009

hi dont be scared i have sclc for the last 6 months is going god is good

LadyJ1963
Posts: 2
Joined: Apr 2013

Hi Nipcat-  I hope this finds you well. xoxoxox

leeann52's picture
leeann52
Posts: 1
Joined: May 2013

Just been diagnosed with stage 2A nsclc. Trying to get insurance for more tests and surgery. I am petrified.need a pet scan and i think an mri.

dennycee
Posts: 658
Joined: Mar 2011

Contact the social worker in the oncology department of your hospital.  They have programs that help qualify you for special funds they set aside.  If no luck there look into Medicare.  

medi_2's picture
medi_2
Posts: 506
Joined: Aug 2009

Hi Kerstin, I was diagnosed with sclc limited New Years Eve '09. Been through all the treatments, lost my hair twice and boy has it been a ride! I just had a CAT a few weeks ago and at the end of the month I get the results. It has been 8 months since I was given an 'all clear'. This site has been a real Godsend because hearing stories first hand is a great from of therapy.
Don't worry (yeah right), you will get though it and my advice is to do anything physical you can. I never stopped through my treatment and it really helped. Any little bit will help ;). Please keep us posted!
Medi

kgmanfred
Posts: 1
Joined: Apr 2006

Hi Lisa, my name is Kim and I was diagnosed with Stage 1 SCLC in March of 2004 at age 40. On March 31, 2004 I had surgery to remove the upper portion of my right lung and after pathology it was determined it was Stage 2. I then underwent chemotherapy and thought I would be cancer free. On my follow-up CAT scan in July of 2004 they found that I had developed a second cancer in my lymph nodes and underwent 42 rounds of radiation. In January of 2005 I was declared in remission. Yes, you will have anxiety, I do every 4 months when I go back for the CAT scans, but you cannot dwell on it. I try to live every day to the fullest. Yes I have many health problems related to the chemo and radiation, but as of today I am still cancer free and thank God and everyone around me for letting me be here. Congrats to you as a fellow survivor!

jenn123
Posts: 2
Joined: Apr 2006

I just have to reply to all of you who are so far winning the battle of small cell cancer. My sister (44 yrs) was just diagnosed with this and we do not know what to expect. All your posts have given me some hope that this can be beat.
Thank you so much

janius
Posts: 16
Joined: May 2006

Hi: My husband has just been diagnosed with small cell lung cancer (Limited) and has had 8 radiation treatments and 3 days of chemo with the next round to start in 2 weeks and every 3 weeks after that for two more times. Radiation is 5 days a week. If all is clear after this he will have the cranial radiation. I would be interested in hearing about your continuing treatments and progress. My e mail is: hersh@powwwer.net

Jane

janius
Posts: 16
Joined: May 2006

Hi LIsa: My husband was diagnosed with SCLC on May 19, following a bronchoscopy and biopsy. He started radiation that same day for 8 days straight and 3 days of chemo VP16 and cisplatin...very strong doses. Today he had a blood test showing his white BC is a bit low but not bad but he will have to take prescription potassium. The Dr. thinks his agressive treatment has resulted in the reduction of his very large tumor to a size that probably can't even be seen on an X-Ray. He will have another round of chemo for 3 days in about 2 weeks and then two more rounds every 3 weeks. He had three days of being very miserable...constipated, dehydrated, nauseated, fatigued and depressed. But he is doing much better today and is eating better though he says the food (especially meat) tastes like tin. Let me know how you are doing.

hopedebbie
Posts: 3
Joined: Jun 2006

Afternoon my friend. I was told I have small-cell back in March. The way you are feeling is normal. As for me I am a christian so I have had much peace within myself, I wish I could say the same for my family. I believe there are many wonderful doctors out there, however remember they are human, they are not God, and God is who will have the last call. Think posative this has done a world of wonder for me, believe you will beat it and that is most of the fight. I will be sure to keep you in my prayers. Hold on, and fight....deb

PMACC1
Posts: 1
Joined: Jul 2011

HI IM PAUL IM A 10 YEAR SURVIVOR OF LIMITED STAGE SMALL CELL LUNG CANCER
HAD CEMO PLUS RADIATION = ALSO RADIATION TO MY BRAIN WHEN I WAS FIRST AWARE I HAD LUNG CANCER THEY DIDNT GIVE ME AND HOPE OF EVEN LIVING DURING THE FIRST ROUND OF CEMO
YOU COULDNT SEE MY LUNGS ON THE X-RAY ALL YOU COULD SEE WAS A BUNCH OF SPOTS THAT LOOKED LIKE OATMEAL.. IT HAD STARDED ON MY RIGHT LUNG AND CROSSED OVER TO MY LEFT LUNG AND WAS WRAPING ITS SELF AROUND MY HEART.. BUT THANK GOD HE SPARED ME AND IM FREE FROM CANCER... 2-2001 TIL NOW 7-2011

linfighter's picture
linfighter
Posts: 4
Joined: Apr 2013

Glad to hear a survor of this length exits. God Bless

linfighter's picture
linfighter
Posts: 4
Joined: Apr 2013

So good to know you can survive . I have 12 more radiation treatments, one more cycle of Chemo and then 10 brain radiation for prevention. God Bless you and keep you

elisa60
Posts: 2
Joined: Apr 2013

Hi ,  Yes there are survivors of small cell.  My husband was diagnosed Aug. 2009.  He is cancer free now, the mass is gone  (april, 2013).  He opted for clinical trial with the usual first line defense cocktail of chemo, with agressive radiation treatment.  We cant thank the Buffalo VA enough.  After going to a well known Cancer Institute and them just saying to" get your affairs in order", we couldnt get out of there quick enough.  SO YES LINFIGHTER  YOU CAN AND WILL SURVIVE.  STAY POSITIVE, GET INFORMED, DO YOUR RESEARCH , AND BE AGGRESSIVE.  You might be interested to know that three others that started the trial the same time as my husband at the VA are also alive.     God speed

pkaz53
Posts: 84
Joined: Nov 2005

My name is Paul and I'm a long term survivor of limited stage small cell lung cancer. I was diagnosed in the fall of 2003, my treatment consisted of 4 rounds of chemo Cisplatin and Etoposide in combination with radiation to the chest twice a day for a total of 30 then 15 PCI to the brain.

I just celebrated my 60th birthday April 21st and am thankful and blessed. I want you to know that there are survivors of this dreaded cancer.

May God bless you, Paul

ilovemywifedearly
Posts: 1
Joined: Apr 2013

my wife was diagnosed with stage 3 limited lung cancer she has been 6 months cancer free and counting .can i asked you some ?'s about what you did after chemo and radiation.my wifes name is sharon and mine is billy thank you for your time.

 

Gray Hair Gypsy
Posts: 5
Joined: May 2013

Hi Paul, It is up lifting to read your story. My brother is battleing lung cancer and is the hospital as I write this, with a collasped lung. cancer is a scary thing. But there are so many survior stories that help us all cope with our own or a love ones battle to beat it. Thanks for sharing. I needed this. M

monica4g
Posts: 2
Joined: Apr 2013

Hi everyone, I am new to this site myself and know that sharing with other that are in the same place as me and my family is very impotant. We just found out that my mom has small cell lung cancer, I think she is still in shock as for me, I have cryied so much that nothing comes out anymore. I have read so many positive stories and want to thank everyone for sharing. I beleive that God has a plan and some times its not what we want or think should happen, but he never wants us to lose hope and reading these stories has gave me that. The next few days seem like they will be one of the hardest, doctor needs to determine what stage and the game plan. thanks to you guys that have openend your hearts with info, so those of us that are a newbie won't fill in the dark

monica4g
Posts: 2
Joined: Apr 2013

Hi everyone, I am new to this site myself and know that sharing with other that are in the same place as me and my family is very impotant. We just found out that my mom has small cell lung cancer, I think she is still in shock as for me, I have cryied so much that nothing comes out anymore. I have read so many positive stories and want to thank everyone for sharing. I beleive that God has a plan and some times its not what we want or think should happen, but he never wants us to lose hope and reading these stories has gave me that. The next few days seem like they will be one of the hardest, doctor needs to determine what stage and the game plan. thanks to you guys that have openend your hearts with info, so those of us that are a newbie won't fill in the dark

LadyJ1963
Posts: 2
Joined: Apr 2013

Hi everyone-I am so happy to have found this website, because I too am new at this, I am my husband's caregiver, and it is not an easy task even though we will be celebrating out 26 year wedding anniversary this upcomong June and have been together since we were 16 from high school, we are both 50 years young, and my husband "HAD QUIT" smoking about three months prior to the diagnosis (go figiure!) Doing the right thing, then hit with this terrible disease, so angy, so scared so upset, I wish they would just STOP manufacturing cigarettes!! The government can't because they would lose out on billions, especially here in NEW YORK, packs are over $10.00...The US Government is keeping everyone "addicted"....but besides that, it is terrible.  I have seen him deteriorate before my eyes within one months time from the diagnosis!  The weekend before  Easter he was having bad heartburn and nausea, tried everything, nothing worked, ironically, I called our Physician who called in a script for ZOFRAN (the anti-nausea meds given to Chemo Patients) it helped a little, but not great, so we went to the ER that Tuesday, they did the blood work, ask a million questions, he was alwasy complaing of bad back pain under the "wing" shoulder blade, continually and his side as well......(Where the liver is)......hence, e was told he had phneuomonia and they saw a mass...... w were then told he had lung cancer, blew us away!! Our whole world, crumbled down right then and there.......We could not understand as to why everyone gave him a "clean-Bill-of health" pior because he has QUiT, all blood work and cardiologist reports were all good!!!  Go figure :(

But the bottom line was, he had a belly sono and the cancer went there as well as to the brain, for which he has received 14 rounds of Radiation to his brain, (last one was yesterday, 4/28/13), had his 3 consecutive days of the chemo (VP16 and Cisplatin) HARD and AGGRESSIVE......the only way to treat the DEVIL of Cancer......he is off for 21 days now till the NEXT round of Chemo, for those with low sodium issues, there is a MIRACLE Drug called SAMSCA (I call it the GOLD!) I have a $2,000.00 Co-Pay for a one month supply (once a day), seems to be the ONLY thing that help it stay at the proper levels, because the tumors secrete a horman that depletes the sodium, causing the person to be dilusional, has a chance to have seizures, brain bleed, leasons, etc.....My husbands had gone down to 107 and you have to be hospitalized (Normal level is 125-135).....they introduced the drug while he was hospitalized..... :(  We have two insurances as weel, if we had no insurance it would have cost $9,000.00 fr 15MG and $18,000.00 for the 30 MG pill!!!! LUDICROUS!!!!! Adam has been weak, so fatigued it is unbeleiveable but TOTALLY normal.  He is dead weight, I have to lift him up off the recliner, mind you, this man is a BIKER dude and was big and Buff, he has to be strong and he is, he is determined to FIGHT this monster inside!

All I can say is, keep the faith, and if you are a cargiver like me, I can totally relate to all you are feeling, it is tough!!!! Me and my husband have been together forever......and I intend to keep it that way!!!  STAY STRONG AND FIGHTTTTTTTTTTTTTTTTTTTT!!!!!!  God Bless everyone battling and dealing with a loved one with this horiffic disease and please stop smoking if you have not done so already.........this is CANCER IS THE Devil's advocate from cigarette smoking, thanks a bunch Philip Morris, the manufacturers of MARLBORO LIGHTS 100's!  If anyone has any questions, or advice for me as a newby, please feel free to contact me.....God Bless xoxoxoxoxo

Karirenee's picture
Karirenee
Posts: 2
Joined: Apr 2013

I am new here. I was diagnosed in February 2013 with stage 3 small cell lung cancer. I just finished chemo and radiation. Now we wait for 3 weeks for a CT-scan to see if it is truly gone. So far they say the cancer did not metastizise anywhere else. No mention has been made for brain radiation as a preventative to me. Now I am not certain if I trust the people who are treating me! I am very afraid and sure need counciling but I have no health insurance so I feel like a second class citizen and just maybe not getting all the care I need to beat this due to my lack of finances. I live in a small rural area with limited resources to help people like me. The only reason I am still sane (I think I am still sane!) is my family. And my belief that God is in charge here, but I am still way depressed and was looking for people who have survived this horrible disease to give me hope that I can beat this too. Thanks for listening to me!

Sophy123
Posts: 1
Joined: May 2013

Hi All & Karirenee

I'm also new to this site. My mum was diagnosed with SCLC stage 4 Extensive. On the 28th Feb 2013. Scary stuff!

It spread to both lungs. Windpipe, and nymph lobes. She had pleural effusion as well.  They put a stent in to help to breathe, and function, and carried out urgent chemo in first week of march.

She just coming to the end of her treatment with chemo, they gave us 8 months from day of diagnosis !!  But there not god, they don't know everything do they? Bit worried about what next, life after her session. I'm worried it may come back.

 And all your stories have certainly given me hope and belief. So I can help my mum fight.! As she very worried, scared, tired, and is not really wanting to hear any kind of timeframe given. 

 

We are fortunate that we live in the UK, so cost isn't a worry as such for us over here. I feel for you and pray that you can get the help and support and treatment you need karirenee.

If anyone has a similar situation to my mum and can offer advise that would be wonderful. !!! 

Jorge
Posts: 3
Joined: Dec 2012

Hi to several of you,

I was diagnosed 5 years ago with NSC adenocarcinoma; had removal of my right upper lobe, some 50 nodes (3 positive) and exploration of my mediastinum (negative). Then 3 months of standard 2 drug chemo. 1 1/2 years after completing that, the cancer recurred in 2 areas on my left lung. Had another course of chemo---3 drugs, although I couldn't tolerate one of them---and made some major lifestyle and dietary changes and began using alternative medicines. I'm cancer-free and just returned from a week of scuba diving in the S. Pacific. I'm happy to supply anyone with my regimen, conventional and not conventional, but cannot see how to attach it to this document so please e-mail me at george@senecacenter.org. 

It's very scary but I think that alternative medicine and dietary changes can have a huge effect. I was able to tolerate Taxol without significant neuropathy but others have had real difficulty with it. My neighbor's neuropathy has improved and he can now play guitar again----he was totally unable to for 2 years. 

George

irene22
Posts: 8
Joined: May 2013

Hi,

I am also new to this board. I was diagnosed August 21, 2012 with NSC adenocarcinoma Stage 4 lung cancer after fighting a cold that would not go away. It wasn't a surprise since I smoked and was in the process of quitting.  I haven't had a cigarette since that day. I began chemo treatments of 3 drugs Aug 30,2012 that ended Nov. 2012. My body reacted well to the chemo treatments well (side effects were a challenge). No radiation treatments were suggested. My oncologist put me on daily pill of 150 mg Tarceva the beginning of Dec.2012. So far the tumor continuses to srink and I'm doing well.

Even though my progress has been good and I don't feel bad, the diagnosis still hangs over my head like a shoe that is ready to fall. I was wondering if there is anyone else out there with NSC adenocarcinoma that has been taking Tarceva that would can chat with me.

Irene 

newbeginning2013
Posts: 2
Joined: May 2013

Everything I have read indicates that full brain radiation should be done as a prophylactic treatment. sclc can spread so quickly and the brain is one of the areas first affected. My mom was diagnosed with sclc and has underwent 20 full brain, 30 lung and a full treatment of chemo. She just began a new round of chemo and has to see the radiation Dr. to find out options for new tumors on her spine. I would question my Dr. about the brain radiation just to be safe. My mom underwent both at the same time but some do radiation after chemo. I hope this helps you.

newbeginning2013
Posts: 2
Joined: May 2013

Hi Lisa. My mom was diagnosed with sclc in September 2012. She underwent the PCI and said that was the worst part of her treatment. She underwent the maximum due to several tumors on her brain so her experience may not be typical. So far she has had 20 PCI, 30 Lung Radiation, 6 rounds of chemo and Last week began a second chemo treatment. I know what you mean about the information being grim. My understanding is that sclc is not curable but is treatable. I pray everyday that my mom beats the odds and goes into remission. You have a much better chance of recovery than my mom does as when they found the cancer she had her primary tumor on the lung, several on the brain and some lymph nodes were affected. She has had a tumor removed from her spine and now has to see the radiation Dr because she has three more on her spine. She also has one now on her liver and one on an adrenal gland. As you can see, hers has spread rapidly even with treatment. I pray yours was caught early and that you have many years to spend with your family.  

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