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Posts: 1
Joined: Jul 2006

Sorry for my english, I'm 38, I'm french,and Iwas diagnosised in January 2006. Cervix+ big mets in the liver, I started chemiotherapy in January every 3 weeks (etoposide+cisplatin) and had 6 cycles of three days. The mets had really well reduced, but at the end of the treatment it was not enough. Now I have taxol+topotecan once a week for three months at last. My case is really very rare in france, even my oncologist is looking for information. I'm scared, my daughter is five years old, I would like to get information, hope from survivors of that type of cancer. Please help me

Posts: 12
Joined: Oct 2003

Hi Collette512
My name is Beth and I am from the US. My French is really bad...much worse than your English :)
Here is a link to a website in the Netherlands. My husband has a type of neuroendocrine tumor called a paraganglioma. He had this treatment inn 2003 and is doing very well. Have your doctor check this out. http://www.prrt.nl/index.php?lang=en
Good Luck to you, there is lots of hope out there...don't give up!


debbeech's picture
Posts: 1
Joined: Sep 2006

Hi Colette512. I was doagnosed with Neuroendocrine carcinoma of the lungs just less than two weeks ago. Had a cat scan and although there is a spot on my liver they don't think its mets since this type of cancer usually has more than just one spot (not sure I believe them). Looks like we will be going through this together so I will keep you posted. The number one think I am reading is to keep yourself healthy so eat lots of fruits and vegetables and do some low impact exercising such as water walking or yoga. You will be in my prayers. Consult with the MD Anderson Cancer Center in Texas. They are considered the experts on this rare type of cancer. That is what I plan to do after I get my pathology report on Wednesday as they want to know exactly what the report states before sharing any information.

Posts: 1
Joined: Mar 2005

Hi Colette,
Hope you are doing OK. My wife had carcinoid cancer which mutated into aggressive pooly differentiated neuroendocrine carcinoma. She is currently half way through chemotherapy of etoposide and cisplatin. It is pretty tough. We do not yet know if it will be at all successful. She has many tumors throughout her body and some visible tumors on her chest. This is a very rare cancer and we have the same problem you do in finding a specialist (in our case in Canada) who is familiar with the disease. There are a number of specialists in the States. We hope to be able to see a doctor in Florida when my wife can travel. Do you find that the taxol and topotecan are helping? How are you doing now? It is so difficult to find people who have the same rare disease and to learn how they are being treated and if something is helping them. All the best, to you

Posts: 4
Joined: Dec 2006

Hi Collette!

I just logged on to this site. My stepsister was diagnosed with cancer of the vulva of the neuroendocrine type in April 2005. She had a radical vulvectomy in April 2005 with removal of nearby lymphnodes. She received cisplatin and etoposide x 3 cycles with very poor results. She then got radiation plus cisplatin and responded somewhat but by March 2006, it metastasized to the spine and the skull (thank God NOT into the brain). We consulted with MD Anderson in Texas and was very much displeased. We then read of a world renowned MD in Sweden and consulted with him in June 2006. He offered us a lot of hope but when we got back to the States, the Oncologist who took over her case did not want to treat her (her oncologist transferred out of the area and we were told that this new Oncologist had agreed to work with the Sweden MD). Well, we contacted Sweden and her former oncologist. We were referred to Harvard with Dr. Kulke who is also one of the top ten in this type of cancer. To make a long story short, she is currently taking 2 out of 4 chemo meds the Sweden MD recommended. She completes her 4th cycle next week and scheduled for MRIs to check response. I share this with you in the hopes that you continue to fight. Contact Dr. Oberg in Uppsala, Sweden. He is the top of this field.
Be strong,