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Neuroendocrine carcinoma - NEED HELP

Posts: 3
Joined: Aug 2007

My name is rao, my wife (30 years old) is diagnosed with well diffrentiated Neuroendocrine carcinoma around may 2007 as stage 4. Oncologist said that they will treat this as small cell lung cancer and termed it as "atypical"

she has a mediastainal mass ( 10 cms) and had a tumour on skull bone, which was removed in june. There are small lesions on back bone ( T4 and L1).
Doctors immediately rushed us to go through chemo therapy ( carbo + etoposide) and later found that after one round that bony tumour on head was not responding - so got surgery to remove it.
recently went through 14 days of radiation on her chest, back and head and now has lot of pain in her right hip, difficulty swallowing and has not being eating at all.
Doctors are planning to start her chemo next week.
Do anyone has any suggestions on what to expect on how many numbers of chemo cycle she has left - and any thoughts on survival rate for these kind..
Any help on doctors/treatement will be most valuable..
best regards to all

Posts: 55
Joined: Jul 2005

Hello. Im sorry about your wife.I dont know much about small cell lung cancer but i encourage you to visit a site called lung cancer support community.Much info and support there and they only deal with lung cancer. I will say a prayer for you and your wife. Mike

Greggriggs's picture
Posts: 132
Joined: Dec 2006

I feel so bad for you an your wife I had a lung removed an Chemo Their is a reason for us all I am still here after a year an a half an I will say a prayer for you wife an you. I have no answers or advise wish I did.

Posts: 7
Joined: Jul 2007

hi, i'm sorry to hear about your wife. my dad was diagnosed w/ lung cancer non small cell stage 4 in june 2007. the cancer metastized to the brain and adrenal glands. in his brain, he had a 3-4 small lesions. his oncologist (who is wonderful) has him on carbo (12 week treatment - once every 3 weeks) and also put him on alimta which is a trial drug that was recently found to penetrate to the brain...so far the MRI and CT scan showed that it is working and the cancer cells in his brain were found to be reduced...so he doesn't need radiation as of yet. we are staying positive..survival rate is different for everyone. i do believe your internal immune system and spirits has a lot to do w/ survival. my dad gets plenty of exercise (via walking 2-3 times a day) and it looks like thus far, his body is responding well to the treatment. we are praying very hard for him to have a prolonged and comfortable life. my prayers are w. you and your family.

Posts: 2
Joined: Oct 2007

My husband has the same cancer and was dx in june with a lump on his head. He had a craniotomy and radiation. The chemo your wife received did not work for my husband. He also failed ironatecan. He is now on taxol and topatecan. He is in a lot of pain. We contacted Dr. Richard warner and his suggestions were good but my husband was not hormone sensitive. There is Dr. Kvol at moffit in tampa and Dr. Thomas o'dorsio at iowa university. We will see one of these Dr.s if no improvement. He has had help with pain via nerve block done at a pain center. Good luck

Posts: 2
Joined: Sep 2008

My brother, 26, has a small or nonsmall (they are not sure) neuroendocrine carcinoma too!! Dont listen to Dr warner..my brother went to him and he put my brother on sandostatin, he was treating the tumor as a neuroendocrine forgetting that it started off in lungs!!! and he did chemo sensitivity test which came back inconclusive!!! stay away from Dr warner, my brotehr's tumor increased from 2 cm to 9 cm while we wasted time seeing him and trusting him!!! Taxol and avastin worked great for my brother, he also has had cisplatin and lot of radiation. He was suppose to start on alemta, but the tumor got soo big that they had to change the chemotherapy, please let me know any survivors that you guys know because they would give my brother hope and something to fight for!!

Posts: 37
Joined: Jul 2008

my wife has small cell,they at first gave her the same treatment again with no results.she was then put on topotecan which is working wonders so far(2 1/2 months)...and our oncologist says she can stay on it for up to 6 months.From what ive read its determined by how well your cbc numbers hold up...cant let things get too low.But the drug works well for us,and shes getting her hair back...God bless

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