Date: March 22, 2002
Author: admp
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 |  | I am looking for a helpful web site myself. You see, my husband who is only 27 has just been diagnosed as having carcinoma with neuroendocrine features. We are currently trying to make the decision of which way would be the best way to fight this disease. One surgeon has said that he would not do the surgery which would involve an agressive whipple procedure, though we were told that there probably is a surgeon out there who would perform the surgery. So, one option is to continue searching for "that" surgeon. Or, we could go ahead and begin chemo which would consist of cisplatin and etoposide. I would like to find someone who has had a personal experience with this form of chemo for this type of cancer.
Good luck to you, this is a very scary time to say the least. Could you tell me more about your situation?
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Date: March 27, 2002
Author: njsis
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| | My brother has been diagnosed with neuroendocrine cancer. No one seems to know a lot about this. I found some info under Memorial Sloan Kettering Cancer Center, then type in neuroendocrine tumors. A good one my friend sent is: The Carcinoid Cancer Foundation Inc. www.carcinoid.org. The Cancer Information Centers in USA, lists the top 15 centers. Please let me know any new info that you might find.
Thanks
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Date: April 5, 2002
Author: Sunshine4u
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| | My sister was recently diagnosed with neuroendocrine cancer. We are just beginning the search. Is it true that this cancer is so rare that only one in a million contract the disease? Thanks for the information you already provided. I will let you know what I uncover in my search and I'll post it here.
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Date: April 5, 2002
Author: rgmcmo01
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| | I myself was diagnosed with neuroendocrine carcinoma with metatasis to the liver. It will be two years on June 29th that I was diagnosed. I had the same problem that alot of people do, which is trying to find information in regards to this rare type of cancer. I was able to get some information from the NIH website. I was informed when I was diagnosed that only 1% of the population has this type of cancer. I also work in the health care field and have for about 20yrs. It is very frustrating when looking for information on this cancer everybody tells you,"well sorry we just don't know a whole lot about your type of cancer." If you access the NIH website you should be directed to Cancernet.com You will have to type in Neuroendocrine Carcinoma and or Carcinoid and or Carcinoma with Unknown Primary good luck to you. You can also check for Clinical Trials through the NIH.
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Date: April 5, 2002
Author: melrod5273
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| | I have Neuroendocrine Carcinoma Small Cell of the Vagina Unknown Origin. I am a healthcare worker and work in a hospital on the Oncology floor. I have seen several specialists but not one has ever seen this type of case. I have been undergoing chemo (Cisplatin and Etoposide) and radiation treatments. The radiation treatments include external, which consisted of a treatment every day for 25 days, and now I will be receiving a radioactive seed implant for 3 weeks. The doctors have told me that they can not tell me how long I will be having the treatments. I am a work in progress. The chemo treatments I am taking are for 3 days every 21 days. Yes you do get weak and nausea. I have found that if you take your nausea medication before the treatment it helps. I would also recommend that instead of them having to find a vein for the IV talk to your doctor about getting a Port put in. This is a device that is inserted under the skin in your upper chest where they can administer the medication and take blood without making you a pin cushion. It does not hurt and is alot easier on the patient. Make sure that you take a good multivitamin. It seems to help me. The doctors have told me that I will not feel like working, but I have been able to go a few days for a few hours. The radiation has been the hardest for me. At first I was okay but after the 20th treatment I have experienced alot of pain and am unable to be on my feet for more than 30 minutes at a time. Tuesday I go for a check on my progress and hope to hear some good news. I'm sorry that there is not much more I can tell you, but be strong and positive. Trust me I know this is hard, but it is harder on the people who love you. Let them be there for you, it helps them.
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Date: April 13, 2002
Author: geralvon
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| | Whipple procedure? It sounds like it must be in the pancreas. These 'neuroendocrine' tumors are usually Islet cell tumors. 'Islet' refers to the islets of Langerhans, little islets of cells in the pancreas which produce insulin. Carcinoid tumors produce serotonin. I think I found my information by using google. I was interested because I have been trying to learn about angiogenesis inhibitors. The company that makes one called Endostatin is doing research on using these to treat 'neuroendocrine' cancer. You can get some information through entremed.com They are in phase II clinical trials, using these inhibitors on different highly vascularized cancers. I hope this helps you get some more information. You can also find out through various searches, where they are doing these trials. Some places are looking for patients with these rare forms of cancer. One thing I can say is that the phase I trials have shown that there are almost no side effects to this treatment. I, myself, have a low-grade nonHodgkins lymphoma and seem to be doing well.
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Date: April 30, 2002
Author: adr1an
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| | Dear Admp
I also was diagnosed with neuroendocrine cancer in the pancreas at age 27. That was January 9th 2002. I started on chemo, cysplatin and endostatin. I had to switch to Carboplatin because I had problems with my ears as a result of the cysplatin. I have also gone through 5 weeks of radiation. We don't know yet how things are going but please write me at arivera1524@msn.com. I would like to keep in touch.
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Date: June 8, 2002
Author: sweettart
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| | I've also have neuroendocrine cancer. my tumors are in the mediastinal(chest) by heart then lung also now lymph nodes.. I found most my info at medline plus. I know its hard to find out much on this. I'm starting chemo next week. good luck I hope this helps you.
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Date: July 1, 2002
Author: papatims
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| | Hello all -- I was diagnosed with SMALL CELL, MERKEL CELL NEUROCARCINOMA --a rare type of neuroendricine cancer. When I was diagnosed four and one half years ago I was told I was a stage four and would be very lucky to live another six months!
Since, I have had two reoccurances in other areas of my body.
I chose to have surgical removal, radiation and no chemo -- so far good choices!
My experience is that very little information is available and it is depressing trying to find any info when so little is available. The biggest dissappointment I have found is when the specialists say -- "gee -- I heard about this type back in medical school, but nobody ever actually sees a case of this!"
I have learned to give God the credit due, live each day to the fullest - and do my best to keep on sucking air each and every day.
Keep on keeping on!
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Date: July 15, 2002
Author: LarryLynn
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| | I am 34 and was just diagnosed with high grade neuroendocrine cancer in my right pelvis which may be mestatic. My oncologist does not know the specific type of cancer and said he doubts that there are 100 cases in the literature regarding a neuroendocrine tumor in the pelvis. Like everyone else, I was told that there is very little information available. I will have surgery as soon as possible. It is very distressing to have my oncologist say there is no information and then in the next breath ask if I am okay with all this.
Please add me to the list of those looking for more information. I wish you all strength and peace. |
