Neuroendocrine Carcinoma

Evans7634

BreezySwede said:

chemo pill
I'm sorry to be replying so long after question. I didn't get the word that my Cisplatin/Etopocide IV's were not quite cleaning things up until after your post.I had lesions on my liver after having primary growth removed from my Colon in May 2009. In October I came to START Cancer Center, San Antonio, TX and November 3, 2009 started an experimental pill from Array in Colorado. I have had some rash and odd blood labs but am feeling good. Imagery indicates no new cancer growth since starting the study. The study is following eye health closely as some other patients have had reaction there. Pardon spelling.

Just told she has neuroendocrine tumor
My 78 year old mom was told she has this cancer. She found it in her breast. She had breast cancer 15 years ago and we thought it was Inflamtory Breast cancer because of what it looked like. But with the results of a core biospy and reading the PET scan we found out it didn't spread on other organs and what cancer it really is.It is 8mm big and in the lymp nodes.She is a level 3. Since it is so rare I hope they know what they are doing. We are going to Jefferson Hospital in PA. And she starts Chemo and radition in one week. Three days straight and three weeks off. Can you tell me what they used on you?

Evans7634

lbpen said:

Neuroendocrine - chemo pill
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

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

Evans7634

mr steve said:

CHEMO FOR NET
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

chemo for net
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

Evans7634 said:

chemo for net
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?

evans7634
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

Evans7634 said:

chemo for net
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?

evans7634
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

Evans7634 said:

chemo for net
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?

evans7634
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

COUSINANGIE

bz said:

tell more about your treatment
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

Hello
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

COUSINANGIE said:

Hello
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 -

newly diagnosed
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.

Unknown

tebolt said:

newly diagnosed
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.

This comment has been removed by the Moderator

Jons mom

bz said:

rcg
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

bz,I lost my 24 year old son
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.

tonidale

Ralphfico said:

hi chris I have nueroendocrine tumors in my liver
I have found treatment and vow to stay healthy.
If you are interested e mail me. (chemo is not effective) Ralph bluecrabs@adelphia.net

TheraSphere
have you heard of this treatment? this is glass radioactive beads that are injecte to the liver. my friend has had this twice for his cancer. he is still having a battle. he is i think 3 yrs into his cancer and many surgury radiation and the TheraSphere treatment later his lastest results as of yesterday was the tumers are the same. great news they have not spread of gotten bigger. but the same..sad news to me..

mr steve

tonidale said:

TheraSphere
have you heard of this treatment? this is glass radioactive beads that are injecte to the liver. my friend has had this twice for his cancer. he is still having a battle. he is i think 3 yrs into his cancer and many surgury radiation and the TheraSphere treatment later his lastest results as of yesterday was the tumers are the same. great news they have not spread of gotten bigger. but the same..sad news to me..

Therasphere
It was offered to my wife. we went with just the chemo injected into the liver. where is your friend getting treatment?

jports1049

COUSINANGIE said:

Hello
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 -

Here for my mom
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.

dlaarndt

tonidale said:

TheraSphere
have you heard of this treatment? this is glass radioactive beads that are injecte to the liver. my friend has had this twice for his cancer. he is still having a battle. he is i think 3 yrs into his cancer and many surgury radiation and the TheraSphere treatment later his lastest results as of yesterday was the tumers are the same. great news they have not spread of gotten bigger. but the same..sad news to me..

TheraSphere
They have offered these to my husband who is 63 years old and we are going next Friday for the test to see if he can have them, hopefully they will work. He has had 18 Chemo treatments and now his platlets will not get high enough so he can not get any treatments. they wanted to change his treatment to the pill and another chemo. He was on 4 hours at the doctors and then he went home for 46 hours on a pump, but his body just cant rebound this time so hopefully the therasphere will work.

dlaarndt

tonidale said:

TheraSphere
have you heard of this treatment? this is glass radioactive beads that are injecte to the liver. my friend has had this twice for his cancer. he is still having a battle. he is i think 3 yrs into his cancer and many surgury radiation and the TheraSphere treatment later his lastest results as of yesterday was the tumers are the same. great news they have not spread of gotten bigger. but the same..sad news to me..

TheraSphere
They have offered these to my husband who is 63 years old and we are going next Friday for the test to see if he can have them, hopefully they will work. He has had 18 Chemo treatments and now his platlets will not get high enough so he can not get any treatments. they wanted to change his treatment to the pill and another chemo. He was on 4 hours at the doctors and then he went home for 46 hours on a pump, but his body just cant rebound this time so hopefully the therasphere will work.

dlaarndt

tonidale said:

TheraSphere
have you heard of this treatment? this is glass radioactive beads that are injecte to the liver. my friend has had this twice for his cancer. he is still having a battle. he is i think 3 yrs into his cancer and many surgury radiation and the TheraSphere treatment later his lastest results as of yesterday was the tumers are the same. great news they have not spread of gotten bigger. but the same..sad news to me..

TheraSphere
They have offered these to my husband who is 63 years old and we are going next Friday for the test to see if he can have them, hopefully they will work. He has had 18 Chemo treatments and now his platlets will not get high enough so he can not get any treatments. they wanted to change his treatment to the pill and another chemo. He was on 4 hours at the doctors and then he went home for 46 hours on a pump, but his body just cant rebound this time so hopefully the therasphere will work.

maynard

jports1049 said:

Here for my mom
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.

Not alone
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.

tebolt

jports1049 said:

Here for my mom
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.

Check out the site Heartland
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

jports1049 said:

Here for my mom
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.

NeuroEndrocrine tumor
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

lawelle

lbpen said:

Neuroendocrine - chemo pill
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

University of Chicago
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.