Neuroendocrine Carcinoma

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Comments

  • Rribbit
    Rribbit Member Posts: 9
    Fellow gyn neuroendocrine
    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....
  • Rribbit
    Rribbit Member Posts: 9

    Hi Grand. I saw your message. My name is Kim, and I have just been told that my cancer (neuroendocrine carcinoma, cervical) has re-occured with mets to the liver. I am very scared. Please help me by giving me any info you can. I know that God can heal me, and I am praying. I have an 18month old baby to live for, so plaese help me. Kim

    HI Kim - we're in the same boat, well kind of...
    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
  • mr steve
    mr steve Member Posts: 285
    Rribbit said:

    Fellow gyn neuroendocrine
    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....

    Rribbit
    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
  • cups368
    cups368 Member Posts: 2
    tv241st said:

    Hey Chris, I was diagnosed about about a month ago. Originally diagnosed in April with Esthesioneuroblastoma. Had surgery in May. Pathology of tumor came back as poorly differentiated, high grade, neuroendocrine carcinoma. Will be starting radiation and chemo in about a week or so. How are you doing? Any advice for a newbie?

    neuroendocrine carcinoma
    Hi my name is Andrea and my husband was given the news 7weeks ago. It has spread to the liver. We are waiting to start chemo. It is low grade and well defferinated. (sorry about the spelling, learning a lot in a small time). They want to start a chemo pill but we are having problems with funding. Our co-pay is 1,200 a treatment. They are looking into charities and think we will qualify, but I want to start treatment. They think we need a round of 6 treatments, has any one else done the chemo pill?
  • mr steve
    mr steve Member Posts: 285
    cups368 said:

    neuroendocrine carcinoma
    Hi my name is Andrea and my husband was given the news 7weeks ago. It has spread to the liver. We are waiting to start chemo. It is low grade and well defferinated. (sorry about the spelling, learning a lot in a small time). They want to start a chemo pill but we are having problems with funding. Our co-pay is 1,200 a treatment. They are looking into charities and think we will qualify, but I want to start treatment. They think we need a round of 6 treatments, has any one else done the chemo pill?

    cups368
    Have you gotten a 2ed opinion?
  • cups368
    cups368 Member Posts: 2
    mr steve said:

    cups368
    Have you gotten a 2ed opinion?

    No we have not got another
    No we have not got another opinion. We are going to the best place in Ohio The James and we did get the money to cover the price of the chemo pills. We are on the first week and things are going pretty good, next week will be the bad one. Thanks for responding
  • mr steve
    mr steve Member Posts: 285
    cups368 said:

    No we have not got another
    No we have not got another opinion. We are going to the best place in Ohio The James and we did get the money to cover the price of the chemo pills. We are on the first week and things are going pretty good, next week will be the bad one. Thanks for responding

    cups368
    I was going to recommend The James. My wife has been getting treated there since 3-08. We will be going to have surgery again the first part of Oct. We have had nothing but wonderful care. The James was recommeded to us from our Charleston WV Oncologist.
  • mr steve
    mr steve Member Posts: 285
    cups368 said:

    neuroendocrine carcinoma
    Hi my name is Andrea and my husband was given the news 7weeks ago. It has spread to the liver. We are waiting to start chemo. It is low grade and well defferinated. (sorry about the spelling, learning a lot in a small time). They want to start a chemo pill but we are having problems with funding. Our co-pay is 1,200 a treatment. They are looking into charities and think we will qualify, but I want to start treatment. They think we need a round of 6 treatments, has any one else done the chemo pill?

    cups368
    Andrea,

    I hope you still check this site. My wifes surgery was canceled on Monday due to the cancer spreading. We are going to see a Dr. Shah in the next few weeks and I was wondering if this is the same Dr you and your husband are seeing? Have you started the "chemo pill"?

    Steve
  • This comment has been removed by the Moderator
  • BreezySwede
    BreezySwede Member Posts: 1
    cups368 said:

    neuroendocrine carcinoma
    Hi my name is Andrea and my husband was given the news 7weeks ago. It has spread to the liver. We are waiting to start chemo. It is low grade and well defferinated. (sorry about the spelling, learning a lot in a small time). They want to start a chemo pill but we are having problems with funding. Our co-pay is 1,200 a treatment. They are looking into charities and think we will qualify, but I want to start treatment. They think we need a round of 6 treatments, has any one else done the chemo pill?

    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.
  • il6699 said:

    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.

    Other hospitals
    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
    mr steve Member Posts: 285

    Other hospitals
    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.

    THe James
    How long has your friend been getting treatment there?
  • lbpen
    lbpen Member Posts: 1 Member

    Hello Chrisaw; My name is Grand and I was diagnoised with Neuroendocrine Carcinoma in March 2001 and I was told by my doctor that I had 3 months to 5 years to live and I looked at my doctor and told him it was up to Dr. Jesus; I immediately started praying and I asked God for a healing; John 14; What ever you ask in His Name He Will Do It; The cancer is stable; I give all the Praise and Glory to God; I also asked God to send me to M.D. Anderson Cancer Center and God answered my prayers. M.D. Anderson Cancer Center is one of the best Cancer Center's in the world. I was on regular chemotherapy and now I get an injection every month. The injection is call Sandostatin Lar Depot. The cancer has'nt grown since i was diagnoised March 2001 and I give all the Praise and Glory to God. There's Nothing God Can't Do. All you need is faith as small as a mustard seed. Chrisaw if you ever need to talk please e-mail me at grand442003@aol.com; A Friend Forever Grand;

    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
  • iggydesign
    iggydesign Member Posts: 2
    Neuroendocrine Carcinoma - Liver
    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
    renalcarcinoidguy Member Posts: 14

    Neuroendocrine Carcinoma - Liver
    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.

    NET tumors
    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
  • renalcarcinoidguy
    renalcarcinoidguy Member Posts: 14
    il6699 said:

    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.

    2nd opinions and imaging and reco on hospitals
    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
  • bz
    bz Member Posts: 2
    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
  • bz
    bz Member Posts: 2

    NET tumors
    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

    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
  • mr steve
    mr steve Member Posts: 285
    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

    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
  • mr steve
    mr steve Member Posts: 285
    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

    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