NEUROENDOCRINE ISLET CELL NON FUNCTIONING TUMORS

malva
malva Member Posts: 2
edited March 2014 in Rare and Other Cancers #1
Hi,
My husband was diagnosed in August with this rare cancer and has started treatment with sandostatin lar monthly injections. He began these in October, will get another in November and December and then will be scanned to see the results. Is there anyone out there who has been through this? Also I hear a lot about Sweden and am having difficulty finding out what they do for this condition. Please let me know!
Malva

Comments

  • paula57
    paula57 Member Posts: 93
    #2
    I have a rare cell type of ovarian cancer and I'm sorry but I don't know anything about your husbands treatment. I writing because your name is also fairly rare. I have a sister named Malva Joyce but she went by Joyce. The only other time that I have seen the name Malva was in an art magazine. There is an artist named Malva. I just wanted to let you know. I wish you and your husband the very best. Good Luck! Paula
  • cbalanci
    cbalanci Member Posts: 5
    #3
    Maalva--I also take Sandostation once a month although I have neuroendocrine Atypical carcinoid and this drug is usually a treatment for Carcinoid , the slowest of all Neuroendocrine cancers.I don''believe the Sandostatin is helping me but the Drs. wanted to try it anyway. I've heard that Dr. oberg in Uppsala, Sweden is an expert in this type of cancer but there are a few other experts in the states --one being a Dr. Richard Warner associated with Mt Sinia Hospital in N.Y.C.--phone number 212-722-2100. Right now I'm without treatment of my liver cancer since my plateletes and kidneys have been damaged by the Cisplatium and Etoposide chemo. that I took. Looking for some other treatment for Atypical neuroendocrine carcinoid. Good Luck--Charlie--Montemoses@aol.com
  • crazycolls
    crazycolls Member Posts: 8
    #4
    cbalanci said:

    Maalva--I also take Sandostation once a month although I have neuroendocrine Atypical carcinoid and this drug is usually a treatment for Carcinoid , the slowest of all Neuroendocrine cancers.I don''believe the Sandostatin is helping me but the Drs. wanted to try it anyway. I've heard that Dr. oberg in Uppsala, Sweden is an expert in this type of cancer but there are a few other experts in the states --one being a Dr. Richard Warner associated with Mt Sinia Hospital in N.Y.C.--phone number 212-722-2100. Right now I'm without treatment of my liver cancer since my plateletes and kidneys have been damaged by the Cisplatium and Etoposide chemo. that I took. Looking for some other treatment for Atypical neuroendocrine carcinoid. Good Luck--Charlie--Montemoses@aol.com

    Hi! I have been on octreotide treatment monthly for carcinoid syndrome for almost a year. The symptoms, flushing, diarrhea have subsided quite a bit. I began with self injections 3x daily then once a month. I am not familiar with that cancer but i am with treatment. best of luck
  • 42340
    42340 Member Posts: 6
    #5
    Hi Malva,
    My husband was diagnosed with the same in Nov. 04. He receives treatment at UPMC Pittsburgh. HE also had some spots on his liver and that is what they are treating now. For 05' it was chemo embolization every 8 weeks. In DEC. we learned that one tumor had shrunk enough to be considered "Treated" I also have had a very difficult time finding info. on this type of cancer so I understand a little your frustration. Feel free to e-mail me. Maybe we share some information.
  • angelinred
    angelinred Member Posts: 1
    #6
    42340 said:

    Hi Malva,
    My husband was diagnosed with the same in Nov. 04. He receives treatment at UPMC Pittsburgh. HE also had some spots on his liver and that is what they are treating now. For 05' it was chemo embolization every 8 weeks. In DEC. we learned that one tumor had shrunk enough to be considered "Treated" I also have had a very difficult time finding info. on this type of cancer so I understand a little your frustration. Feel free to e-mail me. Maybe we share some information.

    My 33 yr. old husband passed away 8/9/2004 from Islet Cell Carcinoma. (A.K.A.: Insulinoma) I can't answer all your questions but, I would be willing to talk to you. E-Mail me @ AngelinRed@comcast.net.
  • bijankh
    bijankh Member Posts: 2
    #7
    angelinred said:

    My 33 yr. old husband passed away 8/9/2004 from Islet Cell Carcinoma. (A.K.A.: Insulinoma) I can't answer all your questions but, I would be willing to talk to you. E-Mail me @ AngelinRed@comcast.net.

    Hi - My friend has been diagnosed with Neuroedocrine Carcinoma, which has started from stomach and esophagus and it has spread to his liver. Wondering if anyone knows of any survival of similar disease? tnx.
  • john1949
    john1949 Member Posts: 3
    #8
    How is your husband doing now? I hope all is well.
  • john1949
    john1949 Member Posts: 3
    #9
    42340 said:

    Hi Malva,
    My husband was diagnosed with the same in Nov. 04. He receives treatment at UPMC Pittsburgh. HE also had some spots on his liver and that is what they are treating now. For 05' it was chemo embolization every 8 weeks. In DEC. we learned that one tumor had shrunk enough to be considered "Treated" I also have had a very difficult time finding info. on this type of cancer so I understand a little your frustration. Feel free to e-mail me. Maybe we share some information.

    Hi! I was recently diagnosed with a neuroendocrine tumor on my pancreas with mets to the liver. How is your husband doing now?
  • john1949
    john1949 Member Posts: 3
    #10
    bijankh said:

    Hi - My friend has been diagnosed with Neuroedocrine Carcinoma, which has started from stomach and esophagus and it has spread to his liver. Wondering if anyone knows of any survival of similar disease? tnx.

    I know that neuroendocrine is slow-growing. How is your friend doing now? Any treatments?
  • artygman
    artygman Member Posts: 2
    #11
    Hello, I am a 50 yr old male diagnosed February, 2005 with neuroendocrine Islet Cell Tumors. Primary tumor in pancrease, with mets (numerous) in the liver. Stage 4, inoperable. After 3 opinions from 3 hopitals, including University of Chgo and Mayo Clinic, I know see my doctors regularly at U of Chgo. I have had blood draws and C.T. scans every 3 months to monitor tumor growths and movements. I have not had any treatments of any kind yet. We are in a wait and see mode. They are non-functioning, but at times I have some pain and discomfort. Mine are very slow growing tumors. At the U of C, there are many things available if and when I need them. U of C along with Mayo Clinic are regarded very well in treating this type of tumor. Any more questions, I would be happy to help.
  • blpm72
    blpm72 Member Posts: 6
    #12
    artygman said:

    Hello, I am a 50 yr old male diagnosed February, 2005 with neuroendocrine Islet Cell Tumors. Primary tumor in pancrease, with mets (numerous) in the liver. Stage 4, inoperable. After 3 opinions from 3 hopitals, including University of Chgo and Mayo Clinic, I know see my doctors regularly at U of Chgo. I have had blood draws and C.T. scans every 3 months to monitor tumor growths and movements. I have not had any treatments of any kind yet. We are in a wait and see mode. They are non-functioning, but at times I have some pain and discomfort. Mine are very slow growing tumors. At the U of C, there are many things available if and when I need them. U of C along with Mayo Clinic are regarded very well in treating this type of tumor. Any more questions, I would be happy to help.

    Any progress?
    Hello. May I ask how you are doing today?
  • trr5073
    trr5073 Member Posts: 3
    #13
    cbalanci said:

    Maalva--I also take Sandostation once a month although I have neuroendocrine Atypical carcinoid and this drug is usually a treatment for Carcinoid , the slowest of all Neuroendocrine cancers.I don''believe the Sandostatin is helping me but the Drs. wanted to try it anyway. I've heard that Dr. oberg in Uppsala, Sweden is an expert in this type of cancer but there are a few other experts in the states --one being a Dr. Richard Warner associated with Mt Sinia Hospital in N.Y.C.--phone number 212-722-2100. Right now I'm without treatment of my liver cancer since my plateletes and kidneys have been damaged by the Cisplatium and Etoposide chemo. that I took. Looking for some other treatment for Atypical neuroendocrine carcinoid. Good Luck--Charlie--Montemoses@aol.com

    treatment options?
    hello- my fiance has neuroendocrine carcinoid since diagnosed march 31, 2009 and his form of carcinoid is very fast spreading. the carcinoid cancer is acting like a small cell lung cancer. the only place that it is not in his body is the brain-thank the lord! he is only 34. he is on cisplatin and etoposide along with avastin. i truly believe this is not the full treatment and we need an expert! is there anything else anyone has tried? maybe different treatment, or someone else who is in the same boat as us?
    thank you
    tanya trr3687@msn.com
  • kosterhouse
    kosterhouse Member Posts: 2
    #14
    trr5073 said:

    treatment options?
    hello- my fiance has neuroendocrine carcinoid since diagnosed march 31, 2009 and his form of carcinoid is very fast spreading. the carcinoid cancer is acting like a small cell lung cancer. the only place that it is not in his body is the brain-thank the lord! he is only 34. he is on cisplatin and etoposide along with avastin. i truly believe this is not the full treatment and we need an expert! is there anything else anyone has tried? maybe different treatment, or someone else who is in the same boat as us?
    thank you
    tanya trr3687@msn.com

    treatment options
    trr5073,
    Hi, my brother was diagnosed in May of 2009, with neuroendocrine glacagomoma. He has been seeing Dr. Rodney Pommier in Portland, Oregon. You can view studies and seminars on the website at www.nanets.net
    He and a pannel of doctors have been working on research for this cancer for years. He is a very great doctor and we cannot speak highly enough of him. Very caring, honest and lots of wisdom to share. Their staff would be very happy to speak to you. Visit the website and eduacate yourself on every site you can that talks about carcinoid.
    My brother has gone thru several treatments and is currently on sandosatin and octreide. Among the cancer he has also been suffering from a hernia in his stomache and 3 kidney stones. He has undergone a maping of his body to find all the tumors and hopefully the primary, unfortunately wiht this cancer, primarys are very hard to find, because they are so small(they can be as small as a pin tip- very small). My brother just underwent a radio active bead procedure where they treated his right lobe liver. He seems to be doing better and with both the shots he gets slowly seeing improvement. Not that there still arent alot of the chronic symtoms, fatique, flushing and etc...
    I encourage you to reasearch, research and research. Do not quit asking questions. This cancer is very hard to understand and there are soo many facets to it. Find a great doctor and team that has a heart for carcinod and neuroendocrine. a regualr oncologist will not work. You need to build your own team. God bless you and your fiance. My heart and prayers are with you. Blessings, Heidi (kosterhouse@comcast.net)
  • mr steve
    mr steve Member Posts: 285
    #15
    blpm72 said:

    Any progress?
    Hello. May I ask how you are doing today?

    Islet cell non functioning
    Are you still checking the boards?
  • hartleyindiana
    hartleyindiana Member Posts: 1
    #16
    trr5073 said:

    treatment options?
    hello- my fiance has neuroendocrine carcinoid since diagnosed march 31, 2009 and his form of carcinoid is very fast spreading. the carcinoid cancer is acting like a small cell lung cancer. the only place that it is not in his body is the brain-thank the lord! he is only 34. he is on cisplatin and etoposide along with avastin. i truly believe this is not the full treatment and we need an expert! is there anything else anyone has tried? maybe different treatment, or someone else who is in the same boat as us?
    thank you
    tanya trr3687@msn.com

    same boat I think
    my husband was diagnosedwith neuroendecrne cancer inJuly this year. Heis 68 and retired , had prostate cancer 5 yeas ago and ok there, but this came up out of the blue. Jut had terrific stomach pain in July and they thought it was inflamed bowel, found a pinhole in intestine, tried to wait for it to heal (5 weeks) couldnt do colonoscopy would have blow the stuff into his bowel through the pinhole, ended up doing surgery anway and to their surprise, found neuroendecrine tumor had gone through the colon wall was attached to his right leg muscle, around his ureter? to his kidney, after going to Mayo clinic in Minnesota, they confirmed and said it had spread in spots throughtout his liver, we were devasted to say the least, came home for treatment they recommended (chemo) and he has been going through that.
    I must say I haven't asked the drugs they are using, and I will make a point of doing that.
    His is the same, uually found in the lung they say, very rare.

    So sorry for you guys, he is so young for this. Dave has led a full life, but I am not ready to lose him! He is losing weight rapidly though and they will stop treatment if he oses 6 more pounds. I will pray for you! We had a friend give us this information about a clinic in Texas, mayb it will help you"

    Burzynski Clinic phone number 713 335 5697
    they treat rare cancers in a different way i guess
  • mr steve
    mr steve Member Posts: 285
    #17
    hartleyindiana said:

    same boat I think
    my husband was diagnosedwith neuroendecrne cancer inJuly this year. Heis 68 and retired , had prostate cancer 5 yeas ago and ok there, but this came up out of the blue. Jut had terrific stomach pain in July and they thought it was inflamed bowel, found a pinhole in intestine, tried to wait for it to heal (5 weeks) couldnt do colonoscopy would have blow the stuff into his bowel through the pinhole, ended up doing surgery anway and to their surprise, found neuroendecrine tumor had gone through the colon wall was attached to his right leg muscle, around his ureter? to his kidney, after going to Mayo clinic in Minnesota, they confirmed and said it had spread in spots throughtout his liver, we were devasted to say the least, came home for treatment they recommended (chemo) and he has been going through that.
    I must say I haven't asked the drugs they are using, and I will make a point of doing that.
    His is the same, uually found in the lung they say, very rare.

    So sorry for you guys, he is so young for this. Dave has led a full life, but I am not ready to lose him! He is losing weight rapidly though and they will stop treatment if he oses 6 more pounds. I will pray for you! We had a friend give us this information about a clinic in Texas, mayb it will help you"

    Burzynski Clinic phone number 713 335 5697
    they treat rare cancers in a different way i guess

    hartleyindiana
    You might check into Ohio State U. They have done a massive amout of work on this type of CA.

    Steve

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