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Neuroendocrine Carcinoma

chrisaw's picture
chrisaw
Posts: 19
Joined: Nov 2002

Hello- just checking to see if anyone else has been living through this diagnosis. Would love to share experiences.
Chris
Neuroendocrine Carcinoma, Cervical l-2B

mherynk
Posts: 8
Joined: Mar 2005

I just came across your thread again and would suggest you check out www.plantcancer.org. It is designed for young people (I assume you are young since you have a 2 year old baby). The board is more active and less confusing. Also, your spouse may be interested in the yahoo group youngcancerspouses.com.

Rribbit
Posts: 9
Joined: Apr 2009

I have large cell poorly differentiated endometrial carcinoma with neuroendocrine features. I'd like to hear how you're doing - who's treating you, where and how? and the same info. for your 1st diagnosis please - thanks!

-Paige

il6699
Posts: 4
Joined: Apr 2005

I have also been diagnosed with Neuroendocrine carcinoma post liver surgery in Nov 04 (in Hong Kong) after 3 continuous years of monitoring. I had since received Octreotide scan and Endoscopic Ultrasound (espeically on the Pancreas since primary liver neuroendocrine carcinoma is rare). Both tests turned out negative. I am to do follow ups every 6 months with no additonal treatment. Does anyone with this prognosis?

Who out there could suggest me the best US hospital/surgeons to go to for 2nd opinions? Am I limited to just Mayo or M.D. Anderson ? Knowing this is a rare disease, I would trust someone best with the most experience dealing with it.

Hey Grand, are you receving additional treatments such as chemo? I have not been advised to do so.

Stay strong and healthy. This seems the best way to fight back.

Take care and wishing you speedy recovery.

For those who has seen this please help on the the US hospital question. Tks.

AuthorUnknown
Posts: 1564
Joined: May 2006

Hello,

You may want to consider contacting the American Cancer Society's National Cancer Information Center for resources to find treatment centers for your cancer. Cancer Information Specialists are available 24 hours a day at 1-800-227-2345 or by using the "Contact ACS" link at the top of this page.

If you are wanting to correspond with a specific CSN member, you may want to contact them through the CSN internal email system. You can do this by clicking on the envelope icon next to their original message.

I hope this information has been helpful.I wish you the best on your treatment.

Take care and be well,

Dana
CSN Dana

mherynk
Posts: 8
Joined: Mar 2005

If you have been diagnosed with the same thing my wife was diagnosed with, then you need much more aggressive therapy. What what the "official" diagnosis, and where was it made, i.e. what hospital? You can check out our personal page for a little more information.

Friend of CA Pt.
Posts: 1
Joined: Feb 2010

The James Cancer Center in Columbus, OH is a great place to seek a second opinion and innovative treatment options. The James is part of The Ohio State University Medical Center.

mr steve
Posts: 286
Joined: Sep 2009

How long has your friend been getting treatment there?

renalcarcinoidguy's picture
renalcarcinoidguy
Posts: 14
Joined: Aug 2009

I understand you are in Hong Kong...Singapore has a good hospital and shoudl soon be doing PRRT! The SingapOre CNets should have the name if not write them!

I would go to Bad Berka Germany, Dr Richard Baum. Its the best IN MY BOOK and history through this hell....It also has all options including pRRT lu177 and y90 including sugery and chemos, vegf inhibitors. The MD has a video on Utube and you should see it...its on my blog
www.carcinoid.com
is the web site...look for PRRT therapy and Bad Berka. It has SAVED MY LIFE! and retuned my quality!

Here is a summary blog of my 1 year PRRT therapy "birthday" and links including a very good video I would watch if I were you...twice!

http://www.renalcarcinoid.com/2010/05/signapore-conference-video-w-dr-baum.html

Send me an email if you want to chat. My email is on the blog and I am on skype.com. Take care!
rcg

lbpen
Posts: 1
Joined: Feb 2010

Grand I love it. My name is Lauren - I have a son who is 12 and was told he has Neuroendocrine
Carcinoma cancer on Nov 30, 2009 stage 4. It is VERY rare in children. We are going to University of Chicago. We did get 2 other opinons - Childrens Memorial and MD Anderson. MD Anderson did agree with w/UofC when it came how they would fight this cancer. - He is on a chemo pill called sutent. He takes it for 4 wks and then off 2. He just started radiation for the bones. (back and pelvic) - It did spread to the bones - and he is in alot of pain. He only
took the chemo pill for one session so far. - We were told that the tumor on his lung shrunk 25%. Praise the Lord!! I have been praying all the time - That Jesus will heal my son. I know
he can. I have to admit to you and I have admitted to Jesus that sometimes it is hard to keep the faith - when your child is crying cause he is in pain. - I drop to my knees and pray harder. I was having a hard time today w/everything - but Grand after I read your post I feel
that God was speaking to me thru your post. - thank you

Evans7634
Posts: 3
Joined: Jul 2010

i hope your son is ok. how do you know it is in the bones? What test tells you that info?

lawelle
Posts: 1
Joined: Apr 2011

Hello Lauren,
My name is Lisa my younger brother, he will be 31 this month, was recently diagnosed with neuroendocrine carcinom and is starting his third round of chemo tomorrow, etoposide and cisplatin. We have seen two doctors at Edwards Hospital in Naperville, IL and need to find other places to get additional opinions. He was given 6 months to 2 years. Who have you seen at University of Chicago and what have been the results. I hope your son is doing well. I too am praying everyday.

kimrus1
Posts: 1
Joined: Jul 2011

HI Lauren,

My 34 year old son has recently been diagnosed with neuroendocrine carcinoma of the lungs. He never smoked a cigarette in his life. We finally have him being treated at Robert Lurie Cancer Center at Northwestern University. He is receiving his 2nd round of chemo, cisplatin and etoposide as well. I am wondering waht area your brothers cancer is in and how he is doing.Please let me know.

debbiewesch
Posts: 3
Joined: Jan 2013

Hi Lisa, my daughter 34 has just found out she has this horrid cancer. Is your brother still hanging in there?

 

Rribbit
Posts: 9
Joined: Apr 2009

Hi Chris - you still on this site - I am stage 3/4 endometrial neuroendocrine carcinoma. Would love to know how you were treated, where and how you fared....

mr steve
Posts: 286
Joined: Sep 2009

Hi,

My wife has had surgery for NE 4-15-09. Primary pancreas with mets to liver. Now we found spots on the ovaries. What treatments have you had?

Steve

iggydesign
Posts: 2
Joined: Mar 2010

I happened on this site and found that there are "a lot" of people here that have similar cancers and I wanted to know if I can get some additional info which others have discovered.

I am getting severly depressed with my diagnosis of this cancer. I am not getting answers from my current oncologist. Everytime I try to ask questions about my cancer, I am always getting neutral replies of "we need to watch and see what happens" or "we do not have enough information to really give you the answers you want". I have lost my job because I am unable to sit or stand for anymore than an hour at a time. Everytime I go into an interview I have to wear a head scarf because half of my head is bald and the other has 5 o' clock shadow. I was even told by a head hunter that I cannot wear my head scarf to interviews, even after I told them I was wearing it because I had radiation therapy and have half a head of hair.

I am 40 years of age and I have multiple neuroendocrine carcinomas in my body which include the liver, pancrease, spine and my skull. I was diagnosed about 7 months ago. I have gone through 2 round of chemo using 5FU and Streptososin. I also had 15 rounds of radiation for my skull. I was recently told by my oncologist that I need to see a specialist since the chemo will not work. I will be seeing a Dr. at the Moffitt Cancer Center in Tampa, FL on the 24th of March. While I was waiting for my visit, I had a recent bone scan which shows another tumor in my skull which has recently appeared in the last 2 months. The tumors in my liver have grown twice as large in the last 3 months and I have 3 tumors in my spine.

I wanted to know if anyone has had any treatments for this cancer and had no growth or decrease in growth or any of their tumors. I also wanted to know if anyone has a good site on the net about this type of cancer. Even more, are their any websites or communities that support this cancer.

I am not sure how this site takes email, but any replies to my message would be greatly appreciate to my personal email address of iggydesign @ hotmail . com as well as any posts to this site.

renalcarcinoidguy's picture
renalcarcinoidguy
Posts: 14
Joined: Aug 2009

Iggy...looks like you are in the middle of 'hell of net tumors".....you need to work this aggressively as it appears you may have a aggressive form, through I am not sure to be clear, but if your not, being treated with chemo is not good...

going to Moffit is a good thing and I have been there and done that for 2 years...02-04 and then back for a 6 month encore. I have a ton on information on my blog and if you go to the inital entries in 2008 you will find my history and Md's including Moffit experience. Remember, I went there when they just brought in the carcinoid MD (Kvols) and not a lot of people knew much about this carcinoid thing...except K

www.carcinoid.com
is the web site...look for PRRT therapy and Bad Berka. It has SAVED MY LIFE! and retuned my quality!
Here is a sumamry blog of my 1 year PRRT therapy "birthday" and links including a very good video I would watch if I were you...twice!
http://www.renalcarcinoid.com/2010/05/signapore-conference-video-w-dr-baum.html

I hope this helps and I will send to your email also.
rcg

bz
Posts: 2
Joined: Jun 2010

please email me at bthzellers@aol.com

my sis is considering chemo for her current diagnosis....but she prefers not to do it....she has twin daughters she need to raise...and me her sister to spend the next phase of our life together...help...bz

Jons mom
Posts: 2
Joined: Aug 2010

bz,I lost my 24 year old son in May.His radiation worked great on his brain tumors but I think if he had to do it over again, he would have not had the chemo. It made him sick and always naseous.It is a hard decision.I wish her the best of luck.

bz
Posts: 2
Joined: Jun 2010

hi.....my sister has neuro endocrine cancer.....has had surgeries, liver transplant...and now it is back again....please tell me more...thank so much, bz

mr steve
Posts: 286
Joined: Sep 2009

BZ,

wife has been fighting this cancer for over 2 years now she is now on xeloda and temador for the past 8 months and it is showing some great results. She has had a modified whipple procedure, and two tace procedures as well.

Steve

Evans7634
Posts: 3
Joined: Jul 2010

Steve,
Hope your wife is doing ok. My mom will starting Chemo and radio next week. It is in her breast and in the lymph nodes. Where was your wife's tumor? Is xeloda and temador chemo meds? What is whipple procedure and tace procedures?

mr steve
Posts: 286
Joined: Sep 2009

She is doing great. xeloda and temador are chemo tablets. her cycle was 14 days of xeloda and on the final 5 days she took temador. Her tumors were in the pancrease liver limph nodes and oviaries. Whipple is major surgery it is like getting your digestive system replumbed. you can find out more info on the web. Tace is like a heart cath but instead of going to the heart they inject chemo into the liver. hope this helps

mr steve
Posts: 286
Joined: Sep 2009

She is doing great. xeloda and temador are chemo tablets. her cycle was 14 days of xeloda and on the final 5 days she took temador. Her tumors were in the pancrease liver limph nodes and oviaries. Whipple is major surgery it is like getting your digestive system replumbed. you can find out more info on the web. Tace is like a heart cath but instead of going to the heart they inject chemo into the liver. hope this helps

mr steve
Posts: 286
Joined: Sep 2009

She is doing great. xeloda and temador are chemo tablets. her cycle was 14 days of xeloda and on the final 5 days she took temador. Her tumors were in the pancrease liver limph nodes and oviaries. Whipple is major surgery it is like getting your digestive system replumbed. you can find out more info on the web. Tace is like a heart cath but instead of going to the heart they inject chemo into the liver. hope this helps

mr steve
Posts: 286
Joined: Sep 2009

BZ,

wife has been fighting this cancer for over 2 years now she is now on xeloda and temador for the past 8 months and it is showing some great results. She has had a modified whipple procedure, and two tace procedures as well.

Steve

COUSINANGIE
Posts: 1
Joined: Jul 2010

BZ -

Hello. I am on this site for my cousin who is 35 and newly diagnosed with neuroendocrine cancer with primary pancreas and mets to liver. She is currently receiving localized liver chemo and is on treatment #5 - and know the MRI is showing no improvement to the multiple tumors in the liver. The physicians recently told her the first chemo drug they were using was pulled off the market and so they switch to a new drug for the intrathecal liver treatments....Her physicians are now talking about moving to systemic chemo - She is also unsure if this is a route she would like to take??? She received monthly sandostatin injections to control the cancer in her pancreas - I will be interested in hearing folks response to your posting for your sister.

I would like to thank everyone registered and posting on this site as it has been a challenge to find others going through the same diagnosis as we all know the diagnosis is rare -

tebolt
Posts: 5
Joined: Aug 2010

I just found out five weeks ago that I have three lymph nodes affected and multiple lesions on my liver. I started out with a Dr. that didn't seem to know anything about my cancer. He said it was inoperable, fast growing - probably six to nine months - and would start aggressive chemo in three days. A doctor friend of mine wanted me to get a second opinion with Dr. Wolin at Cedar Sinai in Los Angeles. Wow what a difference. After going over my CT scans and PET scan with the radiologist he came back in the room and told me everything I had been told was wrong. The doctor told me I had had it at least six to nine years. I will be operated on next week. They are still trying to find the primary but feel it is in my small intestine. So I'm having an endoscopy Tues. It is a team approach at Cedars but I feel so much better after finding someone who specializes in this type of cancer. He told me the chemo the other dr was going to put me on would not have helped - I would have been sick and bald with no positive results. They plan on using radiation and whatever else it takes during the surgery. Sandostatin came up and they said I will end up managing this cancer for the rest of my life - which would be years and years - so they said.
My email is tebolt50@yahoo.com.

Theonlylucky1
Posts: 1
Joined: Apr 2011

My partner Joseph was just diagnosed with Poorly diff high grade neuroendocrine CA (small cell CA0, anorectal area) With multiple hyopdensities throughout the liver and was giving 6 months to a year live and maybe 5 years with chemo. We are headed to Seattle Cancer Care Allince on May 2 for our second opinion. If anyone can help with this please email me. Johnsonsdragon1@yahoo.com

Theres not much research out there for this type of cancer.

Thanks so much for any help.
Robert

klisesr
Posts: 15
Joined: Nov 2010

Robert - Don't get too discouraged. A lot of folks with neuroendocrine tumors have been given similar news. The key is to go to an expert. I'm not indicating that Seattle Cancer Care Alliance won't have appropriate experts, but in my search for expert physicians, I ended up NOT going to Seattle. I went to Dr. Rodney Pommier, oncolytic surgeon, in Portland at OHSU. He is a wonderful physician - very caring, specializes in treating neuorendocrine patients, and will encourage surgery if it is at all possible - as this is the best treatment option in many instances for patients with neuroendocrine tumors.

Best wishes -
Suzanne

ashortwalk
Posts: 1
Joined: Nov 2011

diagnosed in Sept. 2011, surgery at the Univ. of Ala Hosp. Oct.5, 2011.
1st round of chemo Oct. 31, 2011. next chemo sch. for Nov.30. going to start radiation next week for 5 weeks of that. doctors say got all cancer, and i must to chemo with radiation so it want come back, said if it comes back it is a monster.
how are u and joseph?

jports1049
Posts: 2
Joined: Dec 2010

Hi everybody, My mother was recently diagnosed with neuroendocrine cancer that primarily showed up in her colon. It has spread throughout her liver and there are two lesions on her lung as well. She is starting Chemo today. She has had the original tumor in her colon removed - it was 8 inches! The liver is inoperable, according to our doctor. She is currently seeing a doctor at the Leever Center in waterbury, ct, but we are also getting a second opinion through Dana Farber in Boston. We also will be working with a nutritionist too.

I am wondering if anybody knows of any educational resources about this type of cancer. I am having a hard time finding a lot of information on it. I would like to do my research to make sure we have all of our bases covered. Any advice would be great.

maynard
Posts: 1
Joined: Jan 2011

I was diagnosed 12/22 with NEC of the colon, multiple liver sites, lympodes, and both lungs. I was doing fine one day and my side hurting the next and unable to breathe. i don't know what to tell you. They gave me maybe 4 months w/o treatment and 8 with. According to Jackson doctor, it is inoperatable and incurable. My is fast acting large cell cyokeratin 8/18. I am going to Vanderbilt this week and trying to get into M D Anderson.It is up to our Lord God to decide when it is mine time.

cmcder6493
Posts: 1
Joined: Aug 2011

Hi I just wanted to know how you are doing. My 21 year old son was diagnosed with NEC in Auguast 2008

brendypoo
Posts: 4
Joined: Mar 2012

I will pray for you. hope all is well

tebolt
Posts: 5
Joined: Aug 2010

Check out the site Heartland Carcinoids - they can give you lots of info.

I had my surgery in Sept. last year. The whipple - I was under 16 hours - parts of pancreas, stomach, intestine, liver, the appendix, and of course the lymph nodes. The primary was found in the tube between my pancreas and liver. It was a tough recovery. I still have several tiny tumors in my liver but I'm feeling great now. They are treating me with Sandostatin once a month. I am now living everyday thankful for the extra time. Doctor said it could be years and years. Who knows? Maybe I will get run over by a car before the cancer gets me. One way or another I am thankful I found Dr. Wolin (and Dr. Nissen - the surgeon) at Cedars Sinai.

I lost a lot of weight (which I had been trying to do with weight watchers) - so - happy about that but didn't want it to happen this way. I am still trying to stay out of the bathroom so many times a day. Between Metamucil and Immodium I am not attached to my friend the toilet. However - I live in the mountains and when I head to town I map out the campgrounds that have open bathrooms - just in case.

Good luck
Terry

jeffrey89
Posts: 1
Joined: Mar 2011

Hello ...
My father, age 82 was just diagnosed with primary lesion into his pancreas and METS to numerous lesions in his liver.
So far he is being treated with Sandostatin injections and Afinitor chemo pills...he is tolerating both well for now. Actually too soon to know on the Afinitor.
How is your mother and what course of treatment is she still undergoing?
Sincerely -
Jeffrey

GJ100
Posts: 1
Joined: Dec 2011

Hi Jeffrey,

My husband was diagnosed with a neuroendocrine tumor in September 2010. They have not been able to ascertain the site of the primary tumor but there are considerable METS in his liver. He has been taking Sandostatin injections which were, initially, effective in controlling the diarrhea that is associated with this disease. But, after 14 months, during which time both the dosage and the frequency of administration were increased the diarrhea has returned. As a result of your post we are going to look into the possibility of including Afinitor in his regimen. Thanks!

GJ

mr steve
Posts: 286
Joined: Sep 2009

GJ,

Wife has been on afinitor and avastin for the past 5 months. the diarrhea is even worse than with just the tumor itself. she takes sandostitin lar once a month and the short acting upto 8 times a day takes fiber tablets, opium, creon caps, just to try and keep it under control. The afintor seems to be working the tumors have shrunk almost 25%. She was first dx in 2008.

Steve

brendypoo
Posts: 4
Joined: Mar 2012

Hi Jeffrey

My husband was disgosed with neuroendocrine tumors on his liver in 2007. He too takes sandostatin injections every 28 days. This cancer has a life of its own. Most times he is as weak as a kitten and too tired to wake up othertimes he is just fine. I guess depending where it is traveling at the time. Hard to know what is next. We were told he would only live 3 months that was in 2007. My heart and prayers are with you.

Mary B
Posts: 1
Joined: Apr 2011

My sister was diagnosed yesterday with Neuroendocrine Carcinoma found in the colon and we are trying to hit the ground running on where she should go. We live in Southern California and at first thought UCLA, then a friend has really recommended USC Norris Center with Doctors Josef Lenz and Dr. Robert W. Beart. Has anyone had any experience with these doctors or UCLA?
My sister is the heart and soul of our large family and we are going to fight for every extra day she can get, and we know that it often starts with the right medical team. Any ideas would be so appreciated.

klisesr
Posts: 15
Joined: Nov 2010

Check out the carcinoid.com or caringforcarcinoid.com websites. They list specialists who treat patients with neuroendocrine cancers by state.

kelleym2003
Posts: 1
Joined: Jul 2011

Hi Mary
Just saw your post I know it has been a few months, Dr Ed Wolin at Cedars Sinai is the expert for Neuroendocrine Cancers and is avail for 2nd opinions for most insurances.
Good luck prayers
Kelley

Phchance
Posts: 2
Joined: Aug 2011

Hi Mary. I just joined and seen your post. I saw dr Wolin at cedar-Sinai and he was very helpful & knowledgable. He's an expert in the field. I had a HMO insurance and they covered it. Feel free to message me if you have ???'s. Just FYI my tumor was in breast

Kssb1967
Posts: 5
Joined: May 2012

Another dr. Wolin patient for breast? I see him every 6 months. I am 5 years out. I have a lot of nasty pathology features and will see him another 5 years at least. How are you doing?

brendypoo
Posts: 4
Joined: Mar 2012

how is your sister doing now

patti1959
Posts: 2
Joined: Jun 2012

I can not give you any medical advice but my sister was also diagnosed with NET (primary in the colon) in January of this year. She is also the heart of our family and my best friend. She is going to do her 8th and last round of chemo next week and is doing 23 days of radiation. She has non functional and poorly differentiated tumors which are the worse but also react the best to the chemo. All of her secondary tumors are gone and her original has only shrunk a little. I don't know what will happen when the chemo ends but I hope they give her body a rest. She has done very well with the chemo. She is very tired , but not so sick she doesn't work from home when she came. I wish your sister and your family the best. If you have any questions let me know....
Patti

BellaSusie
Posts: 3
Joined: Nov 2011

Just found out recently that I have a carcinoid in my face. I'm really new to all this! I'm not sure how this site works either. The area where I live played with my life since Feb of this year. Then I went to what I thought was the best cancer center in this area, boy was I fooled. If everyone will just bear with me while I learn how to work this site.

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