Neuroendocrine carcinoma

pferree
pferree Member Posts: 1
edited March 2014 in Rare and Other Cancers #1
hello,
I was diagnosed 6 months ago with nondifferentiated high-grade neuroendocrine carincoma of unknown origin. In lungs, liver, and on rib. 41 - year old male. Have been through 2 rounds of chemo (cisplatin & CPT11). First round was about 50% effective. Found out this week that tumors have become resistant to chemo during 2nd round, tumors have started growing again. Dr. has ordered change to new chemo, Taxal and Epitisode. Starting in 1 week. Looking for any information from survivors of this type of cancer, alternative treatments, etc. Please reply.
Thank you in advance for any and all replies.
P.Ferree

Comments

  • Unknown
    Unknown
    #2
    This comment has been removed by the Moderator
  • georgeanns
    georgeanns Member Posts: 8
    #3
    I've had a similar experience. I was diagnosed at age 32-female- with a neuroendocrine tumor of the rectum in Aug. 2002. I went through 4 rounds of chemo (same as yours.. platinol and CPT11), with not much help. I had surgery in Feb. 2003, removing the rest of the tumor and getting a complete colostomy. I then had six weeks of radiation. Then in Sept. 2003, I had a recurrence in my liver, and I've had an excellent response with my CEA levels. I'm on two IV chemo drugs (I cannot remember the names right now) plus Etoposide, the oral drug. I will find out later this month with a cat scan whether I will have more chemo treatments (I've had six so far this time).

    Do you have any information as far as any experimental drugs or preventative therapy for this type of tumor? Please e-mail me if you ever want to talk about it... georgeannshepard@hotmail.com
  • isletcell
    isletcell Member Posts: 61 Member
    #4
    georgeanns said:

    I've had a similar experience. I was diagnosed at age 32-female- with a neuroendocrine tumor of the rectum in Aug. 2002. I went through 4 rounds of chemo (same as yours.. platinol and CPT11), with not much help. I had surgery in Feb. 2003, removing the rest of the tumor and getting a complete colostomy. I then had six weeks of radiation. Then in Sept. 2003, I had a recurrence in my liver, and I've had an excellent response with my CEA levels. I'm on two IV chemo drugs (I cannot remember the names right now) plus Etoposide, the oral drug. I will find out later this month with a cat scan whether I will have more chemo treatments (I've had six so far this time).

    Do you have any information as far as any experimental drugs or preventative therapy for this type of tumor? Please e-mail me if you ever want to talk about it... georgeannshepard@hotmail.com

    Hi! I think you are the only people i have found that have had neuroendricine tumors. I was diagnosed at 32 as well female with a tumor on the pancreas. 6 months after having my first baby. I just had a major surgery in september and am now waiting for a pet scan result as we found swollen lymph nodes around my liver. I have been told that if it is diseased that i may have to undergo chemo therapy as well. I also understand that there is little to no info on theese types of cancers. Do you know if there are any reasearch projects going on? I understand that the world expert on this topic is in sweeden and my oncoligist has e-mailed him with my case previously.
    Have you had the octriotide scan?
    Have you had the tumor marker blood tests for this type of cancer? I forget the name but can find out.
    What types of chemo have you had that were effective?
    Thank you so much for your help any info that you may have would be helpfull.And good luck with all of your treatments. Ill keep the two of you in my prayers.
    Jennifer
  • georgeanns
    georgeanns Member Posts: 8
    #5
    isletcell said:

    Hi! I think you are the only people i have found that have had neuroendricine tumors. I was diagnosed at 32 as well female with a tumor on the pancreas. 6 months after having my first baby. I just had a major surgery in september and am now waiting for a pet scan result as we found swollen lymph nodes around my liver. I have been told that if it is diseased that i may have to undergo chemo therapy as well. I also understand that there is little to no info on theese types of cancers. Do you know if there are any reasearch projects going on? I understand that the world expert on this topic is in sweeden and my oncoligist has e-mailed him with my case previously.
    Have you had the octriotide scan?
    Have you had the tumor marker blood tests for this type of cancer? I forget the name but can find out.
    What types of chemo have you had that were effective?
    Thank you so much for your help any info that you may have would be helpfull.And good luck with all of your treatments. Ill keep the two of you in my prayers.
    Jennifer

    Thanks for your e-mail! I'm sorry to hear about your lymph nodes. I will be hoping and praying for you the tests are negative for the disease.

    My doctor, too, told me there is little known about these types of cancer. He treated mine initially as if it were a small-cell type lung cancer, with not so good results. This time I am getting VP-16 (orally), taxol, and carboplatin. I think they ran the test for the specific neuroendocrine tumor markers, but my blood didn't indicate any. The only thing I had was the high CEA levels. And yes, I did have the octriotide scan, shortly after my surgery. It was negative. The tumors didn't show up in my liver until about six months after my radiation treatments.

    Do you know the name of the doctor in Sweden?

    I don't know of any studies being done. I tried to get into MD Anderson, and they refused to see me because I had already had two chemo treatments, and they said it is their policy not to see new patients who have already had two chemo treatments. I do know of another clinic in the Houston area that uses non-traditional treatments in cancer patients (including neuroendocrine cancers), and I will look it up for you, because I can't remember the name of the doctor right now. Problem is I don't think insurance pays for it because it's not FDA approved.

    Please let me know how things go for you. I will be thinking and praying for you.

    Georgeann
  • isletcell
    isletcell Member Posts: 61 Member
    #6
    georgeanns said:

    Thanks for your e-mail! I'm sorry to hear about your lymph nodes. I will be hoping and praying for you the tests are negative for the disease.

    My doctor, too, told me there is little known about these types of cancer. He treated mine initially as if it were a small-cell type lung cancer, with not so good results. This time I am getting VP-16 (orally), taxol, and carboplatin. I think they ran the test for the specific neuroendocrine tumor markers, but my blood didn't indicate any. The only thing I had was the high CEA levels. And yes, I did have the octriotide scan, shortly after my surgery. It was negative. The tumors didn't show up in my liver until about six months after my radiation treatments.

    Do you know the name of the doctor in Sweden?

    I don't know of any studies being done. I tried to get into MD Anderson, and they refused to see me because I had already had two chemo treatments, and they said it is their policy not to see new patients who have already had two chemo treatments. I do know of another clinic in the Houston area that uses non-traditional treatments in cancer patients (including neuroendocrine cancers), and I will look it up for you, because I can't remember the name of the doctor right now. Problem is I don't think insurance pays for it because it's not FDA approved.

    Please let me know how things go for you. I will be thinking and praying for you.

    Georgeann

    Thank you so much for the info. And for responding . You are the only person that I have been able to locate with any kind of info on this topic.

    The name of the doctor in Sweeden is Dr. Oberge (not sure on spelling)and apparently he is the worlds foremost expert in Neuroendricine tumors. He is the one who recomended that if the Octriotide scan and the chromogranin-A blood test were negative; which they were , not to give chemo. There are several people around the world that are specializing in this feild and i was lucky to get an oncologist that has taken up an interest in this area. He e-mailed my protocol around the world to several "experts and then went with the advise of this guy. It should be noted that the response was 50/50 as to weather or not to give chemo. I think because it went into one of the 7 nodes that they pulled out.
    I recently saw my surgeon and he felt that the swollen nodes were reactive from the surgery or the paritinitus that that i got 6 weeks post surgery after the drainage tube was pulled.
    I have been extremely frusterated with the lack of info on this topic.
    What are CEA levels???? Is that the liver test??
    How long after anitial diagnosis did the tumor show up on the liver?? What is md anderson??

    Being as how we are the same age at diagnosis and both female, I think we could have alot of info to share. Ill start a new post under Neuro endricine carcinoma and mabye our posts can help someone else.
    I guess this sight is going to be on the Sharon Osborn show this Thursday, so im hopeing that the word will get out and we can meet more people with this type of cancer. Its not only extremly isolating being this age and dealing with this disease but having a rare cancer makes it even worse. There really is no support available. I prayed to meet someone like you. I feel blessed for that.
    How are you feeling at the moment?? are you going through any treatments?? What has this journey been like for you??
    I tried to read your personal story but there wasnt one?? You should consider posting it, its easy to do; just fill in the blank. Your story could be used by so many people like me that are desperate to find a story like their own.Thank you so much for responding.

    Take care,
    Jen
  • Unknown
    Unknown
    #7
    This comment has been removed by the Moderator
  • nolson
    nolson Member Posts: 6
    #8
    please read my post to
    please read my post to caregivers and take it sersously
  • nolson
    nolson Member Posts: 6
    #9
    pleaase read my post to
    pleaase read my post to caregivers. I have lived this life and continue to do so.
  • nolson
    nolson Member Posts: 6
    #10
    georgeanns said:

    I've had a similar experience. I was diagnosed at age 32-female- with a neuroendocrine tumor of the rectum in Aug. 2002. I went through 4 rounds of chemo (same as yours.. platinol and CPT11), with not much help. I had surgery in Feb. 2003, removing the rest of the tumor and getting a complete colostomy. I then had six weeks of radiation. Then in Sept. 2003, I had a recurrence in my liver, and I've had an excellent response with my CEA levels. I'm on two IV chemo drugs (I cannot remember the names right now) plus Etoposide, the oral drug. I will find out later this month with a cat scan whether I will have more chemo treatments (I've had six so far this time).

    Do you have any information as far as any experimental drugs or preventative therapy for this type of tumor? Please e-mail me if you ever want to talk about it... georgeannshepard@hotmail.com

    sorry to say but tumors and
    sorry to say but tumors and carcinomas are very different. tumors can be controlled but carcinomas cannot.
  • nolson
    nolson Member Posts: 6
    #11
    georgeanns said:

    I've had a similar experience. I was diagnosed at age 32-female- with a neuroendocrine tumor of the rectum in Aug. 2002. I went through 4 rounds of chemo (same as yours.. platinol and CPT11), with not much help. I had surgery in Feb. 2003, removing the rest of the tumor and getting a complete colostomy. I then had six weeks of radiation. Then in Sept. 2003, I had a recurrence in my liver, and I've had an excellent response with my CEA levels. I'm on two IV chemo drugs (I cannot remember the names right now) plus Etoposide, the oral drug. I will find out later this month with a cat scan whether I will have more chemo treatments (I've had six so far this time).

    Do you have any information as far as any experimental drugs or preventative therapy for this type of tumor? Please e-mail me if you ever want to talk about it... georgeannshepard@hotmail.com

    sorry to say but tumors and
    sorry to say but tumors and carcinomas are very different. tumors can be controlled but carcinomas cannot.
  • nolson
    nolson Member Posts: 6
    #12
    georgeanns said:

    I've had a similar experience. I was diagnosed at age 32-female- with a neuroendocrine tumor of the rectum in Aug. 2002. I went through 4 rounds of chemo (same as yours.. platinol and CPT11), with not much help. I had surgery in Feb. 2003, removing the rest of the tumor and getting a complete colostomy. I then had six weeks of radiation. Then in Sept. 2003, I had a recurrence in my liver, and I've had an excellent response with my CEA levels. I'm on two IV chemo drugs (I cannot remember the names right now) plus Etoposide, the oral drug. I will find out later this month with a cat scan whether I will have more chemo treatments (I've had six so far this time).

    Do you have any information as far as any experimental drugs or preventative therapy for this type of tumor? Please e-mail me if you ever want to talk about it... georgeannshepard@hotmail.com

    sorry to say but tumors and
    sorry to say but tumors and carcinomas are very different. tumors can be controlled but carcinomas cannot.

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