neuroendocrine small cell carcenoma

Sooze3821

Sehmom said:

Help?

Hi, my mother has neuroendocrine carcinoma metas tied in her liver.  She has had 8 series of carboplatin and etoposide so Farr and not what they are doing next. Said surgery is not an option. Any one else's stories would be helpful.

Hi Sehmom

Please see the new post I just did "Update for Michael"

pancreas1

CKaye said:

small cell poorly diff neuroendocrine cancer of pancreas
My son was diagnosed February 2011 with a poorly differentiated, small cell, non-functioning neuroendocrine cancer of the pancreas with spread to liver and supraclavicular lymph nodes. Tumor affected adrenal gland and bowel - inoperable. Treated with etoposide and cisplatin and had remarkable response with over 50% reduction in tumor size. Still has mass in liver and pancreas. Progression free for 6 months after chemo. Was off all pain meds, but is starting to have some pain again. The lack of information is particularly difficult for this rare type of cancer, so I understand your situation.

His oncologist has communicated with Johns Hopkins oncologists. Not sure what we will do when it starts progressing again. Choices seem to be slim. David is on and off Medicaid, which also makes it difficult.

Just trying to take one day at a time and be thankful for that day.

small cell poorly diff neuroendocrine cancer of pancreas

I was diagnosed July 2012 with poorly differentiated small cell non functioning neuroendocrine cancer in pancreas tail, spread to liver(all over) and omentum.  I was treated with 5 rounds of cicplatin and etoposide and had a 'complete response to chemo' that is now in the 10th month with clear CT scans and blood work.  I had NO symptoms other than a very sharp pain in my back the day I went into the ER and it was found.  I am 37 years old and healthy.  I am told it is uncurable advanced cancer but i am confused at how it can seemingly be gone now.  Any information on recurrence would be great.  Just very nervous about when it may happen and how will I know in time since I never had symptoms before.  

jhtesq

Sooze

My Net was a small cell carcinoma too.  I wish you and Michael good luck in the future.

jhtesq

jhtesq said:

Sooze

My Net was a small cell carcinoma too.  I wish you and Michael good luck in the future.

9 month review

Scope on Sept 18.

Pet Scan Oct 7

Dr vist Oct 14

Anxiety !

Kbanks735

jhtesq said:

Sooze

My Net was a small cell carcinoma too.  I wish you and Michael good luck in the future.

Husband

My husband's diagnosis is very similar to yours.  He has been through 2 rounds of chemo (carbo and etopocide).  Recent scans have shown no change, so his oncologist is considering other options.  May I ask what your treatment regimen has been?

 

Many thanks.

jhtesq

Kbanks735 said:

Husband

My husband's diagnosis is very similar to yours.  He has been through 2 rounds of chemo (carbo and etopocide).  Recent scans have shown no change, so his oncologist is considering other options.  May I ask what your treatment regimen has been?

 

Many thanks.

Small Cell Carcinoma

Hang in there.  I received 4 rounds of carbo and etopside the last two with 28 daily dosages of radiation.

I did well on the carbo and etoposide and had encouraging results after two rounds !

Perhaps your husband will find better results as the treatment continues.

Other oncologist I saw considered cisplatin with etoposide but cisplatin is very toxic and from what my treating oncologist advised should be avoided.

Where is your husband being treated ?

You may contact me at jhtesq@yahoo.com if you would like to.

 

Selina1selina

joann p said:

Hi

I just wanted to say hi and hope that all is well!!! I am coping, day by day, with the passingof Frank as best as I can, some day's are harder than other's, but I know that he is in a better play and keeping an eye on us!!! Continue to fight on, along with Michael, sooze and others in frank's memory!!!

                                                                                    Love to you,

                                                                                         Jo

So sorry to have read about

So sorry to have read about your husband.. 

Be strong love and carry on.. 

Take care 

And good luck to everyone else out there fighting cancer.. 

 

My best friend ha been diagnosed with small cell cervical cancer and is currently undergoing chemo..  3 days chemo 14 days off..

Hoor she fights it.. 

Xx

Sooze3821

End of the road for Michael

Michael passed today very peacefully.  He gave it a good fight and I am very proud of this brave husband of mine. 

northa914

Sooze3821 said:

End of the road for Michael

Michael passed today very peacefully.  He gave it a good fight and I am very proud of this brave husband of mine. 

Sooze3821

I'm so sorry to read about Michael's passing.  Your posts were and still are an inspiration to us to keep fighting.  Take care, you are in my thoughts and prayers.

jhtesq

Sooze3821 said:

End of the road for Michael

Michael passed today very peacefully.  He gave it a good fight and I am very proud of this brave husband of mine. 

Sooze,
 
I have no words to

Sooze,

 

I have no words to ease your unhappiness.  I won' try to make them up.  I feel awful but will remember his courage daily.

 

JT

 

tgarrett

jhtesq said:

Small Cell Carcinoma

Hang in there.  I received 4 rounds of carbo and etopside the last two with 28 daily dosages of radiation.

I did well on the carbo and etoposide and had encouraging results after two rounds !

Perhaps your husband will find better results as the treatment continues.

Other oncologist I saw considered cisplatin with etoposide but cisplatin is very toxic and from what my treating oncologist advised should be avoided.

Where is your husband being treated ?

You may contact me at jhtesq@yahoo.com if you would like to.

 

high grade neuroendocrine carcenoma small cell stage 3

I was diagnosed with this in March 2012.  Mayo operaten three days latter and removed my Cecum, Apendex, 18 inches of my large intestine, 1inch of my small intestine and 24 lymph nodes which 4 were cancerious, . After that I went thru 6 months of cemo.  My alternative treatments are;  Rick Simpson Cannabis oil and Citric acid infusions.

As of today 2 years and 7 mo. after the operation I feel great. (Knock on wood)

Anybody know if anyone has beat this?

 

 

 

 

survivingsu

tgarrett said:

high grade neuroendocrine carcenoma small cell stage 3

I was diagnosed with this in March 2012.  Mayo operaten three days latter and removed my Cecum, Apendex, 18 inches of my large intestine, 1inch of my small intestine and 24 lymph nodes which 4 were cancerious, . After that I went thru 6 months of cemo.  My alternative treatments are;  Rick Simpson Cannabis oil and Citric acid infusions.

As of today 2 years and 7 mo. after the operation I feel great. (Knock on wood)

Anybody know if anyone has beat this?

 

 

 

 

Undifferentiated Small Cell Carcinoma Uterine Cancer

Hi there,

I had undifferentiated small cell carcinoma of the uterus back in July, 2009.  I went through both chemo and radiation simultaneously, then surgery, then follow-up chemo.  I went back to work in March, 2010, and have been doing fine since.

My very best to you,

Susan

na123

selehka said:

Alisa - I hope this finds you doing well. A very late reply, but just joined the board.

I have Neuroendocrine Carcinoma, Non small cell type, lung primary (non-smoking related) with met to Brain. It was discovered in mid July when I had a small stroke and the MRI showed 2 brain tumors.

I've spent weeks searching out this type of cancer with few results but did find out a few things. Mainly that the brain involvement is so rare that it isn't mentioned - but it is normal for it to involve the stomach, colon, ovaries, lymph nodes etc. The first thing is to find out if it is a carcinoid type of tumor, then it makes it's own hormones - this is what makes it so aggressive. One brain tumor went from 1.5 cm to over 3 in about 3 weeks, hence the craniotomy in August. The other is too deep in to be surgically removed so had SRS. Refused WBRT as my research as shown that in my case the SRS is just as effective.

Work closely with your doctor on any supplements/herbs. I prefer the naturopathic way myself but had to discontinue almost all I was taking. Seems what helps with others can cause increased tumor growth in this type of cancer. Good thing I like broccoli - lol.

I've found that there is a good survival rate if found early and treated as you're having it done. It's frustrating to have a rare cancer as you know.

Acupuncture, massage - anything that helps you feel better and cope is good. ((hugs))

Neuroendocrine Carcinoma

Hi!

 

    I’m hoping this is the right forum to reach out to patients of Neuroendocrine Carcinoma. My name is Nancy and I am a high school senior currently doing a project on Neuroendocrine Carcinoma. My project is a yearlong exploration of my passion for Cancer research. I hope to gather personal accounts of patients and doctor experiences throughout my journey for the intended goal of spreading awareness about a disease that many people may not be informed about. As my final product, I want to produce an audio story of these collective experiences. If you would be interested in sharing your story (which can be 100% confidential) please reach out to me at nancyaleid@live.com. Thank you!
~Nancy

na123

Sehmom said:

Help?

Hi, my mother has neuroendocrine carcinoma metas tied in her liver.  She has had 8 series of carboplatin and etoposide so Farr and not what they are doing next. Said surgery is not an option. Any one else's stories would be helpful.

Neuroendocrine Carcinoma

Hi!

 

    I’m hoping this is the right forum to reach out to patients of Neuroendocrine Carcinoma. My name is Nancy and I am a high school senior currently doing a project on Neuroendocrine Carcinoma. My project is a yearlong exploration of my passion for Cancer research. I hope to gather personal accounts of patients and doctor experiences throughout my journey for the intended goal of spreading awareness about a disease that many people may not be informed about. As my final product, I want to produce an audio story of these collective experiences. If you would be interested in sharing any experiences that you have with this disease (which can be 100% confidential) please reach out to me at nancyaleid@live.com. Thank you!
~Nancy