Small Cell Lung Cancer

bugaboo24
bugaboo24 Member Posts: 5
edited March 2014 in Lung Cancer #1
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
«1

Comments

  • reinstones1
    reinstones1 Member Posts: 92
    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.
  • michaelcie
    michaelcie Member Posts: 133
    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
    bugaboo24 Member Posts: 5

    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

    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
  • bugaboo24
    bugaboo24 Member Posts: 5

    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.

    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
  • AJL
    AJL Member Posts: 13
    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 [email protected]

    Andy
  • kgmanfred
    kgmanfred Member Posts: 1
    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
    jenn123 Member Posts: 2
    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
  • Kerstin
    Kerstin Member Posts: 9
    AJL said:

    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 [email protected]

    Andy

    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
    AJL Member Posts: 13
    Kerstin said:

    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

    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
  • janius
    janius Member Posts: 16
    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: [email protected]

    Jane
  • janius
    janius Member Posts: 16
    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
    hopedebbie Member Posts: 3
    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
  • nipcat
    nipcat Member Posts: 7
    Kerstin said:

    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

    hi
    hi dont be scared i have sclc for the last 6 months is going god is good
  • medi_2
    medi_2 Member Posts: 505
    Kerstin said:

    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

    HI!
    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
  • PMACC1
    PMACC1 Member Posts: 1
    LUNG CANCER
    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
    linfighter Member Posts: 4
    PMACC1 said:

    LUNG CANCER
    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

    I also have SCLC

    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

  • linfighter
    linfighter Member Posts: 4
    PMACC1 said:

    LUNG CANCER
    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

    So amazing

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

  • ilovemywifedearly
    ilovemywifedearly Member Posts: 1
    PMACC1 said:

    LUNG CANCER
    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

    congrads on your 10 year mark paul.

    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.

     

  • elisa60
    elisa60 Member Posts: 2

    I also have SCLC

    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

    linfighter

    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
    pkaz53 Member Posts: 84

    I also have SCLC

    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

    Hello linfighter

    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