Neuroendocrine carcinoma

il6699
il6699 Member Posts: 4
edited March 2014 in Rare and Other Cancers #1
After singular liver resection 6 months ago and diagnosed as Neuroendocrine carcinoma with unknown origin, I did PET/CT 3 days ago and it was suspected that there is recurrence in liver plus new lobules in lungs. I went to the Memerial sloane Kettering affiliate in Hong Kong and they said doing some tests may help diagose Islet cell neuroendocrine carcinoma or Carcinoid. Am now waiting for 5HIAA 24 hour urine result plus another Octreotide test.

There seems many ways to contain growth eg. Sandostatin, Chemo etc but there aren't enough data points to know effectiveness. Do I just have to "bet" on things now. Who might have successful experience or suggestions on which Oncologists to go to for improved odds? MD Anderson? Sloane Kettering?

Some mentioned Dr. Oberge in Uppsula in Sweden but information on him is scant.

Thank you for your help.
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Comments

  • mherynk
    mherynk Member Posts: 8
    #2
    If you have a carcinoid you have a much less aggressive tumor than my wife has. Check out the carcinoid foundation's website. For neuroendocrine tumors it is important that you get an accurate diagnosis. MD Anderson will give you a second opinion based off of the pathology specimans. You just need to send them all of the pathology slides and (for a small fee-$250-I think) they will review them and write a report. Check out their webpage and call new patient referall to get the correct information. Once you have a definitive correct diagnosis you can move forward looking for the best treatment. I have learned to be my wifes advocate, push hard, call in favors, don't take no for an answer, and pray alot. Good luck.
  • il6699
    il6699 Member Posts: 4
    #3
    mherynk said:

    If you have a carcinoid you have a much less aggressive tumor than my wife has. Check out the carcinoid foundation's website. For neuroendocrine tumors it is important that you get an accurate diagnosis. MD Anderson will give you a second opinion based off of the pathology specimans. You just need to send them all of the pathology slides and (for a small fee-$250-I think) they will review them and write a report. Check out their webpage and call new patient referall to get the correct information. Once you have a definitive correct diagnosis you can move forward looking for the best treatment. I have learned to be my wifes advocate, push hard, call in favors, don't take no for an answer, and pray alot. Good luck.

    Thank you mherynk, I'll have slides sent to both Memorial Slone Kettering and MD Anderson. Hopefully they come up with the same thing. At the end though, I need the correct treatment because knowing where it oringinated from doesn't matter anymore since resection doesn't help. But the correct diagnosis is important. Tks again. I'll pray for your wife too.
  • isletcell
    isletcell Member Posts: 61 Member
    #4
    il6699 said:

    Thank you mherynk, I'll have slides sent to both Memorial Slone Kettering and MD Anderson. Hopefully they come up with the same thing. At the end though, I need the correct treatment because knowing where it oringinated from doesn't matter anymore since resection doesn't help. But the correct diagnosis is important. Tks again. I'll pray for your wife too.

    In my research, I have found that Oberge was wonderful. I E-mailed him and he e-mailed me back and put me in touch with his top specialist there who I e-mailed back and forth on several ocations. I sent my complete file to them and they reviewed it at no charge and gave me an opinion. I believe that they have an entire wing with 12 beds in their hospital dedicated to neuroendocrine patients and they have the only PET scan in the world were they use a special solution for these types of tumors. I agree with Mherynk that the carcinoid cancer foundations web site is by far the best and most acurate and it has a list of specialists with contact info from around the world. I have personally seen Dr. Pommier who I loved in Oregeon and
    Dr. Janice Pasieka and her team in Alberta, Canada. But I can tell you for certain that if I have a re acurence that I will be on the first flight to Upsalla University in Upsalla Sweeden.

    I hope this helps,

    Jen
  • enterpryzman
    enterpryzman Member Posts: 4 Member
    #5
    isletcell said:

    In my research, I have found that Oberge was wonderful. I E-mailed him and he e-mailed me back and put me in touch with his top specialist there who I e-mailed back and forth on several ocations. I sent my complete file to them and they reviewed it at no charge and gave me an opinion. I believe that they have an entire wing with 12 beds in their hospital dedicated to neuroendocrine patients and they have the only PET scan in the world were they use a special solution for these types of tumors. I agree with Mherynk that the carcinoid cancer foundations web site is by far the best and most acurate and it has a list of specialists with contact info from around the world. I have personally seen Dr. Pommier who I loved in Oregeon and
    Dr. Janice Pasieka and her team in Alberta, Canada. But I can tell you for certain that if I have a re acurence that I will be on the first flight to Upsalla University in Upsalla Sweeden.

    I hope this helps,

    Jen

    I am interested in treatments, ect...my 38 year old wife has non-functioning and I too have been in touch with Oberg.
    She is being treated at Hillman which is part of University of Pittsburgh. At this time her treatment is Sandostating LAR 30mg each 28 days. Looking for options.
    I have accumulated about 20 patients in the USA that now are being treated with this and have been emailing them weekly. We share and keep each other informed. Please email me and I will talk directly to you via another email.
    Michael
  • 42340
    42340 Member Posts: 6
    #6
    enterpryzman said:

    I am interested in treatments, ect...my 38 year old wife has non-functioning and I too have been in touch with Oberg.
    She is being treated at Hillman which is part of University of Pittsburgh. At this time her treatment is Sandostating LAR 30mg each 28 days. Looking for options.
    I have accumulated about 20 patients in the USA that now are being treated with this and have been emailing them weekly. We share and keep each other informed. Please email me and I will talk directly to you via another email.
    Michael

    My husband was diagnosed in Nov. 04, also with non-functioning. It started in the Pancreas and spread to the liver. He is 37 years old and has had 3 chemo treatments to the liver. I have had very little success finding any info on this type of cancer. We are going to UPMC Presbytarian in Oakland, but we also saw Ramanathin (I think its spelled like that) at Hillman. Bot my husband preferred DR. Carr in Oakland. Any type of information would be helpfull.
  • il6699
    il6699 Member Posts: 4
    #7
    42340 said:

    My husband was diagnosed in Nov. 04, also with non-functioning. It started in the Pancreas and spread to the liver. He is 37 years old and has had 3 chemo treatments to the liver. I have had very little success finding any info on this type of cancer. We are going to UPMC Presbytarian in Oakland, but we also saw Ramanathin (I think its spelled like that) at Hillman. Bot my husband preferred DR. Carr in Oakland. Any type of information would be helpfull.

    Hi, I'm now at MD Anderson seeing Dr. James Yao. 2 weeks ago I was at Uppsala. Dr. Oberg found my cancer has high proliferation capacity after tissue statining and so has recommended me cisplatin + etopoxide. I think James Yao at MDACC will recommend me the same too. Who wants to share experince if your case is similar to mine? How should I prepare for it mentally and physically? Hi mherynk what does your wife have? Anything close to mine?

    IL6699
  • mherynk
    mherynk Member Posts: 8
    #8
    il6699 said:

    Hi, I'm now at MD Anderson seeing Dr. James Yao. 2 weeks ago I was at Uppsala. Dr. Oberg found my cancer has high proliferation capacity after tissue statining and so has recommended me cisplatin + etopoxide. I think James Yao at MDACC will recommend me the same too. Who wants to share experince if your case is similar to mine? How should I prepare for it mentally and physically? Hi mherynk what does your wife have? Anything close to mine?

    IL6699

    Congratulations on getting into MDACC-it can be quite difficult. We had a second opinion with Dr. Yao at MDACC, but decided to stick with our current oncologist, Dr. Lynch, at methodist hospital across the street. It sounds like you and my wife have the same type of tumor-although hers probably originated in the cervix. Cisplatin and etoposide have been very effective in my wife. The most recent round of scans showed all the tumors were shrinking, no new ones, and a negative PET scan. Yeah! The cisplatin and etoposide regimen is very taxing and Kara is pretty much wiped out for at least 2 weeks after. The effects have gotten a little worse each time. I live in houston and work in the medical center, let me know when you will be at MDACC and I will come and visit you if you would like. Email me at mherynk@breastcenter.tmc.edu.
  • AuthorUnknown
    AuthorUnknown Member Posts: 1,537 Member
    #9
    enterpryzman said:

    I am interested in treatments, ect...my 38 year old wife has non-functioning and I too have been in touch with Oberg.
    She is being treated at Hillman which is part of University of Pittsburgh. At this time her treatment is Sandostating LAR 30mg each 28 days. Looking for options.
    I have accumulated about 20 patients in the USA that now are being treated with this and have been emailing them weekly. We share and keep each other informed. Please email me and I will talk directly to you via another email.
    Michael

    Michael, I am a little confused by the conversation, so forgive me if I sound stupid when I ask this. You mentioned having 20 people on the same regimen. Is that for neuroendocrine tumors (NETs) or is it for carcinoid syndrome. I am interested in your results.

    Take Care, Sharon
    http://www.rare-cancer.org
  • 42340
    42340 Member Posts: 6
    #10
    enterpryzman said:

    I am interested in treatments, ect...my 38 year old wife has non-functioning and I too have been in touch with Oberg.
    She is being treated at Hillman which is part of University of Pittsburgh. At this time her treatment is Sandostating LAR 30mg each 28 days. Looking for options.
    I have accumulated about 20 patients in the USA that now are being treated with this and have been emailing them weekly. We share and keep each other informed. Please email me and I will talk directly to you via another email.
    Michael

    Michael,
    I'm still looking for your response. My husbands treatment has been adriamyiacin to the liver. They say that it is working, but it doesn't seem to woking fast enough. We're already very tired of the routine. If we don't get some good news soon, I'm afraid he is ready to stop.
  • enterpryzman
    enterpryzman Member Posts: 4 Member
    #11
    AuthorUnknown said:

    Michael, I am a little confused by the conversation, so forgive me if I sound stupid when I ask this. You mentioned having 20 people on the same regimen. Is that for neuroendocrine tumors (NETs) or is it for carcinoid syndrome. I am interested in your results.

    Take Care, Sharon
    http://www.rare-cancer.org

    Sorry for the delay...I was not clear in that post, I meant 20 with the same Cancer, not the same treatment.
    We are getting ready to travel to Dana-Farber in Boston for another opinion and treatment plan. The Sandostatin alone is not working.
    Michael
    michael@isletcellcancer.com
  • isletcell
    isletcell Member Posts: 61 Member
    #12
    isletcell said:

    In my research, I have found that Oberge was wonderful. I E-mailed him and he e-mailed me back and put me in touch with his top specialist there who I e-mailed back and forth on several ocations. I sent my complete file to them and they reviewed it at no charge and gave me an opinion. I believe that they have an entire wing with 12 beds in their hospital dedicated to neuroendocrine patients and they have the only PET scan in the world were they use a special solution for these types of tumors. I agree with Mherynk that the carcinoid cancer foundations web site is by far the best and most acurate and it has a list of specialists with contact info from around the world. I have personally seen Dr. Pommier who I loved in Oregeon and
    Dr. Janice Pasieka and her team in Alberta, Canada. But I can tell you for certain that if I have a re acurence that I will be on the first flight to Upsalla University in Upsalla Sweeden.

    I hope this helps,

    Jen

    I just returned from sweden where I saw professor Barbaro Eriksson! Words can not even begin to say what an incredible experience I had there. They have the ONLY pet in the world that detects these things. I would be happy to discuss this with anyone and would like to highly recomend them to Everyone.
  • isletcell
    isletcell Member Posts: 61 Member
    #13
    il6699 said:

    Hi, I'm now at MD Anderson seeing Dr. James Yao. 2 weeks ago I was at Uppsala. Dr. Oberg found my cancer has high proliferation capacity after tissue statining and so has recommended me cisplatin + etopoxide. I think James Yao at MDACC will recommend me the same too. Who wants to share experince if your case is similar to mine? How should I prepare for it mentally and physically? Hi mherynk what does your wife have? Anything close to mine?

    IL6699

    What was your proliferation capacity?

    Jen
  • KarenHI
    KarenHI Member Posts: 1
    #14
    Hi, I am on my way to meet with Dr. Yao this month. I had a large ovarian neuroendocrine carcinoma removed (and a hysterectomy).I have metasis in my liver,neck, clavicle, underarm, and cervical lympth node. I am going for a second opinion on treatment. I have yet to find another case like mine. I am curious of your meeting with Dr. Yao.
  • cbalanci
    cbalanci Member Posts: 5
    #15
    Hi--I have the same diagnosis--neuroendocrine carcinoma-- since Dec. 04. I did the Octreotide and urine test and they were both negative--therefore it was not carcinoid ( which would have been great since it grows very slow) it is carcinoma, the most agressive of the neuroendocrine cnacers. I have had six months of chemo--Cisplatin and Etoposide and it did a good job of reducing the tumors in both the liver and lung--the lung being the primary cancer site. However I ran into a low platlet problem--down to 66--and not returning so I have been taken off of treatment. There are no other know effective chemos that can be used without damaging the platletes so I am without any treatment. My Oncologist is suggesting Chemoembolization or abalation of the liver to hold the tumors in check. Do you have any advise for me? I have seen numerous Oncologists at Sloane, Mount Sinia, Moffitti Cancer center in Tampa--no new advise. I saw two experts in neuro.--Dr. Warner and Dr. Kvols and they have no chemos that I can use at this time. I hope you are doing well and would love to hear from you.
  • cbalanci
    cbalanci Member Posts: 5
    #16
    I have neuroendocrine carcinoma for the pastseven months and have been on Cisplatin and Etoposide with good results. My platletes have dropped to 66 and have not returned for the past six weeks and they stopped treatment. Has anyone experienced a pllatlet problem and could give me some advise? Thanks-Charlie
  • cbalanci
    cbalanci Member Posts: 5
    #17
    isletcell said:

    I just returned from sweden where I saw professor Barbaro Eriksson! Words can not even begin to say what an incredible experience I had there. They have the ONLY pet in the world that detects these things. I would be happy to discuss this with anyone and would like to highly recomend them to Everyone.

    I would love to go to Sweden to see DR. Oberge or Dr. Eriksson. --How can I arrange it? Can you advise me how to make contact. Thanks--Charlie Balancia--
  • cbalanci
    cbalanci Member Posts: 5
    #18
    isletcell said:

    I just returned from sweden where I saw professor Barbaro Eriksson! Words can not even begin to say what an incredible experience I had there. They have the ONLY pet in the world that detects these things. I would be happy to discuss this with anyone and would like to highly recomend them to Everyone.

    I would love to go to Sweden to see DR. Oberge or Dr. Eriksson. --How can I arrange it? Can you advise me how to make contact. Thanks--Charlie Balancia--
  • lmorris200
    lmorris200 Member Posts: 1
    #19
    isletcell said:

    In my research, I have found that Oberge was wonderful. I E-mailed him and he e-mailed me back and put me in touch with his top specialist there who I e-mailed back and forth on several ocations. I sent my complete file to them and they reviewed it at no charge and gave me an opinion. I believe that they have an entire wing with 12 beds in their hospital dedicated to neuroendocrine patients and they have the only PET scan in the world were they use a special solution for these types of tumors. I agree with Mherynk that the carcinoid cancer foundations web site is by far the best and most acurate and it has a list of specialists with contact info from around the world. I have personally seen Dr. Pommier who I loved in Oregeon and
    Dr. Janice Pasieka and her team in Alberta, Canada. But I can tell you for certain that if I have a re acurence that I will be on the first flight to Upsalla University in Upsalla Sweeden.

    I hope this helps,

    Jen

    My mother has been dignosed with NeuroEndocrine carcinoma - there is a tunor located under the lining of the rectum which was not detected in her last colonoscopy - it has spread to her liver and maybe bone - she will be starting chemo this week. According to the oncologist the prognosis is not good and I am desperate. Do you know of any alternative treatments available. She will be getting platinum. This is all new to me.
    Thanks for any help.
    Laura
  • mamacitadice
    mamacitadice Member Posts: 4
    #20
    lmorris200 said:

    My mother has been dignosed with NeuroEndocrine carcinoma - there is a tunor located under the lining of the rectum which was not detected in her last colonoscopy - it has spread to her liver and maybe bone - she will be starting chemo this week. According to the oncologist the prognosis is not good and I am desperate. Do you know of any alternative treatments available. She will be getting platinum. This is all new to me.
    Thanks for any help.
    Laura

    Laura I just wanted to say you and your Mom will be in my prayers.My husband was just diagnoised with neuroendocrineca.His was found in the axillary lymph node so the origin has not been found yet.God bless you and yours.
  • artygman
    artygman Member Posts: 2
    #21
    I am a 50 yr old male diagnosed February, 2005 with neuroendocrine islet cell tumors. Primary in pancreas, with numerous mets in liver. Get blood and urine workup and the latest ib PET-CT-scans at the University of Chicago hopitals. To date, I have had no treatments of any kind. We are in a wait and see mode. M tumors are extremely slow growing, and in almost 2 years now, they have barely grown. I am in relativley good shape now, but at times have pain. The tumors are non-functioning. I am one who doesn't believe that you need to go to Sweden for quality care. I have been to Mayo Clinic and University of Chicago, and both are in total agreement about my treatment. If and when the time comes, U of Chgo has many options for me to treat the cancer. Any questions, I would be happy to answer in more detail.

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