sclc treatment and recurrence

lban
lban Member Posts: 13
edited March 2014 in Lung Cancer #1
I would love to hear from anyone with sclc. I cannot find anything current on the web. Is it likely to recur after complete remission? My husband was diagnosed 4/06. He has had 4 of 6 chemo regimens and 35 rads to the chest. He wil have pci after chemo ends. Midway through treatment the PET showed 2 tumors "all but resolved" and 1 "significantly reduced in size."

Comments

  • karenlee3sons
    karenlee3sons Member Posts: 35
    #2
    Hi, I am an 8 year lung cancer survivor sclc. Had a lobectomy, chemo and radiation. Never have had a recurrence!!!! Don't ever give up and you must be positive. My husband refused to even entertain any thought except cure. I now go only once a year. Amazing. I wish the same for your hubby
  • LVsurvivor
    LVsurvivor Member Posts: 7
    #3
    You might search through google; it brings up a lot of info.

    SCLC is considered a systemic cancer that is likely to return. Lorraine Johnston's book, entitled Lung Cancer is a good resource. Dr Jimmie Holland's book, entitled The Human Side of Cancer is also very helpful.

    I was dx sclc 5/05 & went through same treatments as your husband. I'm in remission & have connected with many survivors, some 8 and 9 years. I refuse to pay attention to the stats.

    ACOR.org has a list serv that you might find helpful. I've met some wonderfully positive (and realistic) people there. Good luck & if you have any particular questions, post them.
  • lban
    lban Member Posts: 13
    #4
    LVsurvivor said:

    You might search through google; it brings up a lot of info.

    SCLC is considered a systemic cancer that is likely to return. Lorraine Johnston's book, entitled Lung Cancer is a good resource. Dr Jimmie Holland's book, entitled The Human Side of Cancer is also very helpful.

    I was dx sclc 5/05 & went through same treatments as your husband. I'm in remission & have connected with many survivors, some 8 and 9 years. I refuse to pay attention to the stats.

    ACOR.org has a list serv that you might find helpful. I've met some wonderfully positive (and realistic) people there. Good luck & if you have any particular questions, post them.

    Thank you. Google has been by best friend for months, although most of the articles I find are from the 90's. I'll look into those books mentioned as well as ACOR.org
  • lban
    lban Member Posts: 13
    #5
    karenlee3sons said:

    Hi, I am an 8 year lung cancer survivor sclc. Had a lobectomy, chemo and radiation. Never have had a recurrence!!!! Don't ever give up and you must be positive. My husband refused to even entertain any thought except cure. I now go only once a year. Amazing. I wish the same for your hubby

    Thank you for your wonderful story. I continue to pray that my husband has a more positive attitude. It's so helpful to me to hear the good ones.
  • janius
    janius Member Posts: 16
    #6
    My husband was diagnosed with limited sclc on 5/18/2006 and has had 34 rads and 4 3-day rounds of chemo (cisplatin & etoposide). He starts his 5th round on Monday because the PET scan showed two small spots of live cancer although the large tumor is all but gone. He has a wonderful attitude and is determined to get through the rest of his chemos (two more) and have the cancer be gone! Keep in touch.
  • LVsurvivor
    LVsurvivor Member Posts: 7
    #7
    lban said:

    Thank you. Google has been by best friend for months, although most of the articles I find are from the 90's. I'll look into those books mentioned as well as ACOR.org

    Sorry, I started researching more than a year ago & forgot that not much has been written recently. It seems that there has been declining interest in sclc and, unfortuntely, information I've found indicates treatment hasn't changed much in the past several years, except for differences in combinations of drugs and/or dosages, timing with radiation, etc.

    I was shocked to see how old MD Anderson's SCLC care path was, inquired, & was told they plan to update it. When I was treated there, I learned there would not be any significant changes.

    Lots of money goes to breast cancer research and other types, little to lung cancer, although it kills more people each year than most of the other cancers combined.

    Despite that negative information, there are a lot of long term survivors, although I can hardly quantify that. It is reassuring to connect with those who have no recurrence, but also those who have survived multiple recurrences.
  • seinee
    seinee Member Posts: 1
    #8
    janius said:

    My husband was diagnosed with limited sclc on 5/18/2006 and has had 34 rads and 4 3-day rounds of chemo (cisplatin & etoposide). He starts his 5th round on Monday because the PET scan showed two small spots of live cancer although the large tumor is all but gone. He has a wonderful attitude and is determined to get through the rest of his chemos (two more) and have the cancer be gone! Keep in touch.

    Hi..glad to know you're all out there... my mom was diagnosed aug.3,2006 and is about to have her second round of etoposide/cisplatin next week.. it's a shock and it helps reading others experiences... I've done a lot of research and some of the prognosis' seem :-( I like what someone said about staying away from stats...the more i read survivor comments, the more hopeful i feel... im scared but am very hopeful and have lots of faith...thanks all for being there..kim
  • lban
    lban Member Posts: 13
    #9
    LVsurvivor said:

    Sorry, I started researching more than a year ago & forgot that not much has been written recently. It seems that there has been declining interest in sclc and, unfortuntely, information I've found indicates treatment hasn't changed much in the past several years, except for differences in combinations of drugs and/or dosages, timing with radiation, etc.

    I was shocked to see how old MD Anderson's SCLC care path was, inquired, & was told they plan to update it. When I was treated there, I learned there would not be any significant changes.

    Lots of money goes to breast cancer research and other types, little to lung cancer, although it kills more people each year than most of the other cancers combined.

    Despite that negative information, there are a lot of long term survivors, although I can hardly quantify that. It is reassuring to connect with those who have no recurrence, but also those who have survived multiple recurrences.

    Thanks again for staying with me. You see what I mean about current info on the web. The Drs continue to tell us that they will get rid of his current cancer and I'm pretty sure they will but I guess no one can predict the future. He has severe damage to his esophagus from the radiation and has to have an Endoscopy with dilitation every three weeks in conjunction with chemo so he can eat solid food. The GI Dr says it's more than likely permanent damage and he will have to continue with the dilitation (stretching) for some time. It's quite amazing to me how the cure can be so harmful. I worry that he will get cancer again from the treatment. Well, that's enough for now. Thanks for you input.
  • lban
    lban Member Posts: 13
    #10
    janius said:

    My husband was diagnosed with limited sclc on 5/18/2006 and has had 34 rads and 4 3-day rounds of chemo (cisplatin & etoposide). He starts his 5th round on Monday because the PET scan showed two small spots of live cancer although the large tumor is all but gone. He has a wonderful attitude and is determined to get through the rest of his chemos (two more) and have the cancer be gone! Keep in touch.

    God bless him. How is he doing with the treatment. Any side effects?
  • lban
    lban Member Posts: 13
    #11
    seinee said:

    Hi..glad to know you're all out there... my mom was diagnosed aug.3,2006 and is about to have her second round of etoposide/cisplatin next week.. it's a shock and it helps reading others experiences... I've done a lot of research and some of the prognosis' seem :-( I like what someone said about staying away from stats...the more i read survivor comments, the more hopeful i feel... im scared but am very hopeful and have lots of faith...thanks all for being there..kim

    God bless your mom. Even though it looks bleak at times, our loved ones seem to get over the bad times and feel good again. Your mom will too.
  • Kerstin
    Kerstin Member Posts: 9
    #12
    Hi there, I might not be much help since I was laso dx in April of 06 with limited SCLC, I am done with my Radiation to my Chest and Chemo, will haveScans on august 28 and then Brain Radiation...so far I have been doing great...sounds like your husband has done wonderful so far. It`s a rough road and there are people out there that are alive after 10 years and we have to believe that we can do it. YOU CAN DO IT
  • lban
    lban Member Posts: 13
    #13
    Kerstin said:

    Hi there, I might not be much help since I was laso dx in April of 06 with limited SCLC, I am done with my Radiation to my Chest and Chemo, will haveScans on august 28 and then Brain Radiation...so far I have been doing great...sounds like your husband has done wonderful so far. It`s a rough road and there are people out there that are alive after 10 years and we have to believe that we can do it. YOU CAN DO IT

    Kerstin, your treatment sounded much like my hubs. Was your cancer outside your lung at all (mediastinal lymph nodes)? Did you have any difficulty swallowing from the rads to your chest? My hubs will finish chemo mid Sept then get scanned, then PCI.
  • Kerstin
    Kerstin Member Posts: 9
    #14
    Hi, the cancer was just in my right lung, 5cm x3.5 cm, I did not have a lot of problems with swallowing my food...little bites, a lot of water in between bites will help. Now I have been having pains in my back and tomorrow I have a Bone Scan and of course I am worried once more. the treatment for SCLC is pretty standard, not enough money for research so for years they have been doing the same stuff with very little change. Hang in there
  • LVsurvivor
    LVsurvivor Member Posts: 7
    #15
    lban said:

    Thanks again for staying with me. You see what I mean about current info on the web. The Drs continue to tell us that they will get rid of his current cancer and I'm pretty sure they will but I guess no one can predict the future. He has severe damage to his esophagus from the radiation and has to have an Endoscopy with dilitation every three weeks in conjunction with chemo so he can eat solid food. The GI Dr says it's more than likely permanent damage and he will have to continue with the dilitation (stretching) for some time. It's quite amazing to me how the cure can be so harmful. I worry that he will get cancer again from the treatment. Well, that's enough for now. Thanks for you input.

    You're right that the cure can cause a lot of damage. I had the same treatment as your husband, tumor was 6x9cm in right upper lobe & 2 lymph nodes involved. No problem w/esophagus, but damage to phrenic nerve resulting in right side paralyzed diaphragm. I have to use supplemental oxygen because of that. Also, radiation can cause other tumors.

    Despite side effects & future late occurring effects, would anyone of us decide to decline treatment & die? NOT ME!!! It took me a while to accept the fact that my life is forever changed. Despite the unwelcome changes, I'm thrilled to be alive & will find a way cope with the side effects if they increase.

    Fear and worry can take a huge amount of energy. Do you and your husband belong to any support groups? That regular connection with survivors & care providers may be encouraging...
  • grammashorty
    grammashorty Member Posts: 7
    #16
    Iban, My husband has small cell lung cancer. He was diagnosed 4/05. In August 2005, was in remission until October 2005. Yes it can come back, but God is bigger than cancer and He does answer prayers!
    Hubby goes for chemo 3 times one week, one time the next and a week off. This has been going on since October. He plays golf and goes fishing.
    Think on the business of living and keep praying. Best wishes,
    Grammashorty

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