Neuroendocrine Carcinoma

chrisaw
chrisaw Member Posts: 18
edited March 2014 in Rare and Other Cancers #1
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
«134567

Comments

  • tv241st
    tv241st Member Posts: 1
    #2
    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?
  • chrisaw
    chrisaw Member Posts: 18
    #3
    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?

    Hey, TV- I emailed your box here, but just in case you haven't gotten that far, just wanted to let you know you can email me. Will be glad to help in any way. Where was your tumor? Has the cancer spread? Drop me a line.
    Chris
  • Ralphfico
    Ralphfico Member Posts: 2
    #4
    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
  • Ralphfico
    Ralphfico Member Posts: 2
    #5
    bluecrabs@adelphia.net
  • Denise6
    Denise6 Member Posts: 6
    #6
    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

    hi my name is Denise my husband was told he had neuroendoctrine of an unlnown primary liver only we have been through 8 iv chemos and three chemoemolizations this had been 10 month now and i just wanted to know if you had any more info my e-mail is Dwamsley01@sbcglobal.net if i cant remember how to get back to this site please remit thank you very much p.s. he has never been sick from anyof the chemo either so he was healty you need to know how this came to be known how we found out he had this please e-mail me
  • Denise6
    Denise6 Member Posts: 6
    #7
    please go to the e-mail address i sent to you ok i really need to talk to someone i cant talk to my kids . and i know alot about being a doctor im a mother of 4 thanks again
  • Denise6
    Denise6 Member Posts: 6
    #8
    please remit back to me at dwamsley01@sbcglobal.net
  • Denise6
    Denise6 Member Posts: 6
    #9
    Ralphfico said:

    bluecrabs@adelphia.net

    if anyone has this or knows anymore information on this kind of cancer of the unknown primary that is only in the liver please remit thanks
  • harma
    harma Member Posts: 2
    #10
    Ralphfico said:

    bluecrabs@adelphia.net

    hello raf can you help me with this neruoencotrine tumor of unknown primary only in the liver ? email me at Dwamsley01@sbcglobal.net
  • harma
    harma Member Posts: 2
    #11
    Denise6 said:

    hi my name is Denise my husband was told he had neuroendoctrine of an unlnown primary liver only we have been through 8 iv chemos and three chemoemolizations this had been 10 month now and i just wanted to know if you had any more info my e-mail is Dwamsley01@sbcglobal.net if i cant remember how to get back to this site please remit thank you very much p.s. he has never been sick from anyof the chemo either so he was healty you need to know how this came to be known how we found out he had this please e-mail me

    what all have you had done so far it is dec 1st
  • grand442003
    grand442003 Member Posts: 1
    #12
    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;
  • Kimpossible
    Kimpossible Member Posts: 1
    #13
    grand442003 said:

    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;

    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
  • mherynk
    mherynk Member Posts: 8
    #14
    Kimpossible said:

    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, my wife has recently been diagnosed with large cell neuroendocrine carcinoma of the cervix and we are looking for information. She would like someone to talk to who has gone through the same battles that she is about to go through. We are just beginning this journey. http://prayforkara.blogspot.com
  • AuthorUnknown
    AuthorUnknown Member Posts: 1,537 Member
    #15
    mherynk said:

    Hi, my wife has recently been diagnosed with large cell neuroendocrine carcinoma of the cervix and we are looking for information. She would like someone to talk to who has gone through the same battles that she is about to go through. We are just beginning this journey. http://prayforkara.blogspot.com

    Hello,

    You may want to do a search of the CSN web site by typing in relevent search words in the search box at the top of the page. You can then browse through the web pages and postings. If you find someone with an experience similar to what you are looking for, you can then contact them through the CSN internal email system.

    You may also want to post your request on the Cervical Cancer discussion board. You may find someone there who has had this type of experience.

    I wish you wife well on her treatments.

    Take care and be well,

    Dana
    CSN Dana
  • il6699
    il6699 Member Posts: 4
    #16
    grand442003 said:

    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;

    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
    AuthorUnknown Member Posts: 1,537 Member
    #17
    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.

    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
    mherynk Member Posts: 8
    #18
    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.

    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.
  • Monawolf
    Monawolf Member Posts: 1
    #19
    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

    I also have been diagnosed with Neuroendocrine Carcinoma in my liver, lungs and brain. I have had only brain radiation. My oncologist has chosen not to treat lungs and liver until I have symptoms. Does anyone have a similiar situation?
  • mherynk
    mherynk Member Posts: 8
    #20
    Monawolf said:

    I also have been diagnosed with Neuroendocrine Carcinoma in my liver, lungs and brain. I have had only brain radiation. My oncologist has chosen not to treat lungs and liver until I have symptoms. Does anyone have a similiar situation?

    Pardon the lanquage, but that is a **** thing to do. The smaller they are, the easier thay are to treat. Neuroendocrine carcinomas are treated differently depending on what kind you have, but don't wait. If he won't treat you, find someone who will. Go to www.nccn.org to find the treatment guidelines for your particular type. Carcinoids and neuroendocrine carcinomas are the same type of tumor, but have very different outcomes. If you truly have a neuroendocrine carcinoma, you need to be treated with an aggressive regimen. Check out the NCCN guidelines and get your official diagnosis (the exact wording in the pathology report). Armed with these, have a very open discussion with your oncologist about treatment options. Additionally, MD Anderson will offer second opinions for a few hundred dollars. Check out their webpage for more information. Good luck.

    -Matt
  • mherynk
    mherynk Member Posts: 8
    #21
    Kimpossible said:

    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

    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.

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