Extensive SCLC

delligatti
delligatti Member Posts: 21
edited March 2014 in Lung Cancer #1
I am searching for survivors of extensive SCLC. My husband was diagnosed 4 months ago, taking carboplatin & etoposide, and radiation. Thank you.

Comments

  • gelc
    gelc Member Posts: 29
    #2
    I left this for you on an earlier post. Not sure if you saw it.

    There are three other websites I check often
    www.lungcancersurviors.org
    www.alcase.org
    www.ecap-online.org


    I am a NSCLC but those sites have SCLC people too.

    God Bless
  • alwaysbeleive
    alwaysbeleive Member Posts: 3
    #3
    I have small cell lung cancer..I was first diagnosed 11/00. I went into remission for 1 year..In January of 2002 I had a reacurrence in the other lung.
    I would like to chat with others that understand my feelings.
  • delligatti
    delligatti Member Posts: 21
    #4
    alwaysbeleive said:

    I have small cell lung cancer..I was first diagnosed 11/00. I went into remission for 1 year..In January of 2002 I had a reacurrence in the other lung.
    I would like to chat with others that understand my feelings.

    Hello
    I'm so sorry to hear that you had a reoccurrence of small cell. However, as the tumor isn't sizeable, I would say that this is positive. My husband had 4 rounds of chemo with Carboplatin/VP-16, then 15 radiation treatments for the largest tumor. The last scan showed 3 out of 5 tumors gone, leaving 2 in the hilum, chest area. He is having radiation in that area, and will then have to follow up with chemo. I don't understand why the doctors say you'll be on chemo forever, but am I only a "learner" - as before my husband was diagnosed in April, I knew nothing about cancer, let alone small cell lung cancer. Were you a heavy smoker? My husband was. He is very weak and depressed from the treatment but is battling on.
    Kind regards,
    Ann & Joe
  • delligatti
    delligatti Member Posts: 21
    #5
    gelc said:

    I left this for you on an earlier post. Not sure if you saw it.

    There are three other websites I check often
    www.lungcancersurviors.org
    www.alcase.org
    www.ecap-online.org


    I am a NSCLC but those sites have SCLC people too.

    God Bless

    Thank you for your help. These sites are very informative. We are sorry that you have NSCLC - I have heard that Gemzar has had success in this area. However, you're are likely more knowledgeable. I knew nothing about cancer until 4 months ago. At which stage are you, and how is your treatment going? With kind regards, Ann & Joe
  • gelc
    gelc Member Posts: 29
    #6
    delligatti said:

    Thank you for your help. These sites are very informative. We are sorry that you have NSCLC - I have heard that Gemzar has had success in this area. However, you're are likely more knowledgeable. I knew nothing about cancer until 4 months ago. At which stage are you, and how is your treatment going? With kind regards, Ann & Joe

    I was diagnosed 4/21, stage 1A BAC. According to my onc, stage 1A is rarely found. Go figure.

    I had a lobectomy, and no further treatment was warrented. Prior to that I had also had breast cancer 2x, and had radiation and chemo.

    I am glad you are getting answers to your postings. If you haven't read any Bernie Siegel's books, I highly recommend them. Start with Love, Medicine and Miracles.
  • bobz1
    bobz1 Member Posts: 50
    #7
    alwaysbeleive said:

    I have small cell lung cancer..I was first diagnosed 11/00. I went into remission for 1 year..In January of 2002 I had a reacurrence in the other lung.
    I would like to chat with others that understand my feelings.

    Ive been there. two months after I had the top one threrd of my right lungand 4 ribs removev,I found out I had two small tombers in my left lung.I thought here we go again.I had them taken out 2 weeks later.cemo all over again///an you know what,that was 10 years ago.Im still here. an ill be here for you If I can help let me know/////Bobz1
  • delligatti
    delligatti Member Posts: 21
    #8
    bobz1 said:

    Ive been there. two months after I had the top one threrd of my right lungand 4 ribs removev,I found out I had two small tombers in my left lung.I thought here we go again.I had them taken out 2 weeks later.cemo all over again///an you know what,that was 10 years ago.Im still here. an ill be here for you If I can help let me know/////Bobz1

    Dear Bobz1
    May I communicate with you about SCLC. Feeling desperate. My husband Joe has Extensive Stage and has been in the fight for 4 months. Not doing well. Chemo and radiation. Surgery wasn't possible as it had spread widely. I'm wondering if your stage was Limited Stage as you had surgery?
    I am very grateful for your attention.

    Ann
  • bill040445
    bill040445 Member Posts: 1
    #9
    alwaysbeleive said:

    I have small cell lung cancer..I was first diagnosed 11/00. I went into remission for 1 year..In January of 2002 I had a reacurrence in the other lung.
    I would like to chat with others that understand my feelings.

    Bill here . Just received news of small cell lung cancer. My first message to anyone. Hopefully you can send along some type of experience. Going in Mon. 11/17 for fullscan. Thanks,Bill Harris
  • kristin167
    kristin167 Member Posts: 3
    #10
    delligatti said:

    Dear Bobz1
    May I communicate with you about SCLC. Feeling desperate. My husband Joe has Extensive Stage and has been in the fight for 4 months. Not doing well. Chemo and radiation. Surgery wasn't possible as it had spread widely. I'm wondering if your stage was Limited Stage as you had surgery?
    I am very grateful for your attention.

    Ann

    Hi Ann, I hope to hear your

    Hi Ann, I hope to hear your husband is doing well as it's been many years. My story is similar of my Dad. 

    My father was diagnosed with extensive stage small cell lung cancer on Sept. 11th. It had spread to his lymph nodes, with a few small tumors near his esophagus. He started chemo and completed 4 cycles (3 rounds each) in Dec. Following a PET scan they said he would need to do radiation on the only spot that didn't shrink (it grew) but other than that everything else had shrunk significantly. It was found no where else in his body (organs, blood, bones, brain, etc.). He was having trouble breathing, very short of breath, and admitted to the hospital. We were told that the tumor was pressing against his esophagus causing him breathing issues. He had to be intubated, and has been in the ICU for 2 weeks. Finally got him up, extubated, and started radiation this week. He's fighting for his life, he's giving it all he has. They will not tell us how much time but they have said he's not going to be cured, which is just awful. They want to start immunotherapy but the hospital will not do it, has to be done on outpatient. Has anyone had any similar story with actual survival? I'm trying to keep hope alive for a bit more time as I'm only 33 and he's only 70 I want more time with my Dad. Thank you for any advice you can offer.  

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