Need to Connect with Others With Extensive Small Cell Lung Cancer

treemaneric
treemaneric Member Posts: 5
edited March 2014 in Lung Cancer #1
Just dx with extensive disease before Christmas. It seems everyone knows someone who's had lung cancer, but it's always non-small cell. I've only run into one person alive with small cell and hers was limited. I feel so hopeless. If you're out there, going through this, and especially if you're a survivor of extensive small cell lung cancer, please connect.

Comments

  • karenbeth
    karenbeth Member Posts: 194
    #2
    hi treemaneric
    My boyfriend has ext sclc...diagnosed in July 2010 with mets to lung, adrenal glands and brain. Just finishing his first line treatment and we're awaiting the scheduling of scans. Let me know what questions you have, we've only been at this for 6 months but I'll share what I can. And check out the Ispire website, I recently joined and found many sclc survivors there. What treatment are you getting? He had WBR and 4 rounds of carboplatin/etoposide. Hang in there...it's scary. And don't read the statistics! They will fill you with dread for sure, but as everyone here will tell you, we are not statistics. Sorry you had to come here, but welcome.

    Karen
  • medi_2
    medi_2 Member Posts: 505 Member
    #3
    I am
    I am a 2 year survivor of sclc-limited. Plenty of extensive survivors out there, keppe looking!
    Medi
  • pkaz53
    pkaz53 Member Posts: 84
    #4
    medi_2 said:

    I am
    I am a 2 year survivor of sclc-limited. Plenty of extensive survivors out there, keppe looking!
    Medi

    I am a 7 year survivor of
    I am a 7 year survivor of sclc-limited there are more of us !
  • treemaneric
    treemaneric Member Posts: 5
    #5
    karenbeth said:

    hi treemaneric
    My boyfriend has ext sclc...diagnosed in July 2010 with mets to lung, adrenal glands and brain. Just finishing his first line treatment and we're awaiting the scheduling of scans. Let me know what questions you have, we've only been at this for 6 months but I'll share what I can. And check out the Ispire website, I recently joined and found many sclc survivors there. What treatment are you getting? He had WBR and 4 rounds of carboplatin/etoposide. Hang in there...it's scary. And don't read the statistics! They will fill you with dread for sure, but as everyone here will tell you, we are not statistics. Sorry you had to come here, but welcome.

    Karen

    Thanks for the reply. I
    Thanks for the reply. I found Inspire site. Just finished the second round of carboplatin/etoposide and am scheduled for a scan before I see the doc again on 2/7. They say radiation isn't an option (is that what you mean by WBR?--I don't know all the acronyms yet), except for the PCI to the brain after the treatment. Where are you getting treatment. I'm in Ohio.
  • karenbeth
    karenbeth Member Posts: 194
    #6
    treemaneric said:

    Thanks for the reply. I
    Thanks for the reply. I found Inspire site. Just finished the second round of carboplatin/etoposide and am scheduled for a scan before I see the doc again on 2/7. They say radiation isn't an option (is that what you mean by WBR?--I don't know all the acronyms yet), except for the PCI to the brain after the treatment. Where are you getting treatment. I'm in Ohio.

    WBR
    Hi,
    WBR is whole brain radiation. PCI is also whole brain, but prophylactic. His was targeted to lesions he had all over his brain--he had over 20.
    We live in NYC and are getting treatment at NYU.
  • treemaneric
    treemaneric Member Posts: 5
    #7
    pkaz53 said:

    I am a 7 year survivor of
    I am a 7 year survivor of sclc-limited there are more of us !

    Glad you're out there sclc survivors
    Thanks for posting. Just finished 2nd round of carbo/etoposide and not as sick as expected. Hair is falling out a bit, but slowly. Does anyone know about clinical trial using seneca valley virus?
  • Sister Max
    Sister Max Member Posts: 6
    #8
    sclc extended/extensive & long term remission
    Hi treemaneric (and others here). This is my first posting.

    My sister was also diagnosed just before Christmas. I am also looking for long term survivors, in the hopes that i can give her a link to a website that will be spirit lifting.

    Sis has just completed her first round of chemo, as i understand it she will have 12 rounds (3 days on and 3 weeks off for each). She has also been scheduled to receive lung radiation for 45 days straight. A PET scan is scheduled for Tuesday - we pray the c has not gone beyond both lungs, lymph nodes and what the radiologist refers to as 5 freckles in her brain. Following the first round she also received an injection of hemoglobin a day or two later.

    Her chemo consists of 3 bags, as i understand it, they are: (1) fluids for potassium (2) the chemo agents, and (3) an anti-nausea medication.

    She currently reports no ill side affects outside fatigue, and a sleepy feeling while receiving the chemo agent. She does not have a port.

    She has not yet confronted internet research on sclc extended. But i have, and based on what i have found, do not blame her for the hesitation. I belong to another forum and members there have kindly reminded me not to pay too much attention to what i may find (from any web site) as most information is out dated by many years and that advances even in just the last few years have been far more encouraging that what is available on the internet.

    I work hard to keep her spirits up - focusing on the fact that as individuals we are not statistics (there is no calculating the power of the human spirit). I pray you are able to do this also.

    PLEASE - all in this forum who have read this thread, and who are long term survivors - if you will, please stop by and comment on your experience. We need you :-)
  • hope0310
    hope0310 Member Posts: 320
    #9
    Sister Max said:

    sclc extended/extensive & long term remission
    Hi treemaneric (and others here). This is my first posting.

    My sister was also diagnosed just before Christmas. I am also looking for long term survivors, in the hopes that i can give her a link to a website that will be spirit lifting.

    Sis has just completed her first round of chemo, as i understand it she will have 12 rounds (3 days on and 3 weeks off for each). She has also been scheduled to receive lung radiation for 45 days straight. A PET scan is scheduled for Tuesday - we pray the c has not gone beyond both lungs, lymph nodes and what the radiologist refers to as 5 freckles in her brain. Following the first round she also received an injection of hemoglobin a day or two later.

    Her chemo consists of 3 bags, as i understand it, they are: (1) fluids for potassium (2) the chemo agents, and (3) an anti-nausea medication.

    She currently reports no ill side affects outside fatigue, and a sleepy feeling while receiving the chemo agent. She does not have a port.

    She has not yet confronted internet research on sclc extended. But i have, and based on what i have found, do not blame her for the hesitation. I belong to another forum and members there have kindly reminded me not to pay too much attention to what i may find (from any web site) as most information is out dated by many years and that advances even in just the last few years have been far more encouraging that what is available on the internet.

    I work hard to keep her spirits up - focusing on the fact that as individuals we are not statistics (there is no calculating the power of the human spirit). I pray you are able to do this also.

    PLEASE - all in this forum who have read this thread, and who are long term survivors - if you will, please stop by and comment on your experience. We need you :-)

    SCLC W/METS TO BRAIN
    So sorry there are others joining these ranks. While several limited people have chimed in, thought I would give you a briefing of my mothers dx.

    At time of dx she presented w/5cm tumor on lung and 20 Mets to the brain. They tackled the brain first with 15 WBR treatents. Took a week break and started chemo for lung......2 day of first round of Chemo, she could not walk. Straight to the ER.....it had moved to her spine, so back to radiation, again 15 and then back on to chemo.

    Completed chemo and was declared in remission mid July.

    She was still having major weakness and was sent to in patient PT to regain strength, after a couple weeks, we noticed he cognitive skills worsening. So off to Onco we go, and then straight to hospital. Brain scan showed new tumors in brain. DONE. Can only do WBR once.....WTH??? At any rate, they decided to do a PET which also should some lymph node involvement as well as an undetermined mass behind her rectum.

    She went home under hospice care and passed away peaceful at home on Sept 23rd. I am forever CHANGED.

    Again - not posting doom and gloom - we are all a stattistic of ONE. However, what we later found out is that the final PET was the FIRST PET they had done??!!! We were under impression, due to our own ignorance I guess that one had been done, as a matter of fact her onco was sure he had ordered one and one had been done. No blame, really. Love her doc, he is wonderful....

    Lesson here is PLEASE, PLEASE make sure they are doing PET's especially with SCLC - it is a mover and shaker!!

    Be strong, ask questions and love......make memories, none of us know what tomorrow may hold.

    Elysia
  • jasamarenumberone
    jasamarenumberone Member Posts: 13
    #10
    Hi treemaneric,
    My dad has
    Hi treemaneric,

    My dad has SCLC. He was diagnosed June of 2010. I'm going to post my story in a couple of minutes. If my dad is okay, then you will be too!! He was on carbo/etoposide too.
  • djomjo
    djomjo Member Posts: 7
    #11
    pkaz53 said:

    I am a 7 year survivor of
    I am a 7 year survivor of sclc-limited there are more of us !

    Thank you
    My brother was diagnosed 2/1/2011 with small cell lung cancer limited. I've tried and searched for survial stories. Have now come to realize not to look at statistics. I'm soooo happy to hear you've survived limited small cell lung cancer for 7 years. My brother just started his chemo about a week ago and just finished his first week of radiation to the chest area. He seems to be doing great so far but I know it's early. For everyone out there, let's not consider this a death sentence!!! The technology is out there we just have to go with it. I will continue to look for all these wonderful survival stories. Thansk so much
  • pkaz53
    pkaz53 Member Posts: 84
    #12
    djomjo said:

    Thank you
    My brother was diagnosed 2/1/2011 with small cell lung cancer limited. I've tried and searched for survial stories. Have now come to realize not to look at statistics. I'm soooo happy to hear you've survived limited small cell lung cancer for 7 years. My brother just started his chemo about a week ago and just finished his first week of radiation to the chest area. He seems to be doing great so far but I know it's early. For everyone out there, let's not consider this a death sentence!!! The technology is out there we just have to go with it. I will continue to look for all these wonderful survival stories. Thansk so much

    hope
    Sorry to read that your brother has sclc I also was diagnosed limited stage, his treatment seems to be similar to what I did. As your brother undergoes more rounds or cycles it will wear on him, he will be fatigued,it will take some of his strength and he will lose some weight, he will need encouragement and love from you and others, he has to stay positive.

    I attended the 2nd Focus on Lung and Thorasic cancer in Philadelphia Pa. in 2009 and I met and spoke with survivors of sclc limited stage who were 4,5,6 year survivors and those that were in treatment, some of us got up and spoke at the conference telling our stories, what brought tears to my eyes was hearing a story from a 14 year survivor sclc limited.

    Don't ever give up hope,---both of you are in my thoughts and prayers.
  • RizzeRod
    RizzeRod Member Posts: 5
    #13
    treemaneric said:

    Glad you're out there sclc survivors
    Thanks for posting. Just finished 2nd round of carbo/etoposide and not as sick as expected. Hair is falling out a bit, but slowly. Does anyone know about clinical trial using seneca valley virus?

    stay strong and God bless.
    stay strong and God bless. my mother just had her cancer downgraded from limited to extensive just last week. they were already preaching doom and gloom i cried and i constantly think of it. but i have become more stronger and im fighting as if it were me who was diagnosed i love my mother dearly and don't want to lose her. i am a foot soldier for cancer fighters and survivors worldwide. she will fight and win and so will you!
  • cleanfreak79
    cleanfreak79 Member Posts: 2
    #14
    my father was diagnosed with
    my father was diagnosed with e.comxtensive small cell lung cancer in July, and just finished his 2 type of chemo treatment. he goes next week for his bone treatment, the another c,scan to see if this ird kind of chemo will help. its been a long, grueling )ast six months, but my dad is still her, fighting through this. my prayers are with you, and thoughts of good health :)
  • lekkerone
    lekkerone Member Posts: 199 Member
    #15
    cleanfreak79 said:

    my father was diagnosed with
    my father was diagnosed with e.comxtensive small cell lung cancer in July, and just finished his 2 type of chemo treatment. he goes next week for his bone treatment, the another c,scan to see if this ird kind of chemo will help. its been a long, grueling )ast six months, but my dad is still her, fighting through this. my prayers are with you, and thoughts of good health :)

    cleanfreak
    Your dad sounds like a real fighter. All my best to the two of you.
  • Chevy4777
    Chevy4777 Member Posts: 22
    #16
    Ext. sclc
    Good Morning Tree,

    It has been a while since I have been back to this site. I was diagnosed with sclc March 2010. Right lung/midddle lobe. Went thru 1st line Cisplatin/Etoposide chemo 4 rounds and radiation 2x/day for 16 days. It was limited. Was in remission for 4 months and now has come back in a few lymph nodes, however has not spread out of my right mediastinal area. My oncdoc still considers it limited. Go figure, it seems to me it is trying to break out.

    With that being said, I am on 2nd line Carboplatin/Etoposide in my 5th round. One node has gotten larger, but I am lucky that I can get radiation to the node as the rad field does not overlap the one from the previous treatment.

    I have had the PCI to the brain..etc..etc..all recommended treatment options. I had discussed specific treatment scenerios with my radiation oncologist regarding targeted areas if the situation arose. This was one of them, and my medical oncologist agreed.

    Anyway, the reason for this long winded note is to give you this link for a recently opened clinical trial that I am recommended for. Looks promising. as below:


    http://www.cancer.gov/clinicaltrials/search/view?cdrid=692124&version=Patient#ContactInfo_CDR0000692124

    Sloan-Kettering and Duke I beleive are the only trial sites.

    Thought this may help.


    Joe Va Beach, VA

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