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Neuroendocrine Carcinoma - Multiple Sites

Posts: 2
Joined: Mar 2010

I happened on this site and found that there are "a lot" of people here that have similar cancers and I wanted to know if I can get some additional info which others have discovered.

I am getting severly depressed with my diagnosis of this cancer. I am not getting answers from my current oncologist. Everytime I try to ask questions about my cancer, I am always getting neutral replies of "we need to watch and see what happens" or "we do not have enough information to really give you the answers you want". I have lost my job because I am unable to sit or stand for anymore than an hour at a time. Everytime I go into an interview I have to wear a head scarf because half of my head is bald and the other has 5 o' clock shadow. I was even told by a head hunter that I cannot wear my head scarf to interviews, even after I told them I was wearing it because I had radiation therapy and have half a head of hair.

I am 41 years of age and I have multiple neuroendocrine carcinomas in my body which include the liver, pancrease, spine and my skull. I was diagnosed about 7 months ago. I have gone through 2 round of chemo using 5FU and Streptososin. I also had 15 rounds of radiation for my skull. I was recently told by my oncologist that I need to see a specialist since the chemo will not work. I will be seeing a Dr. at the Moffitt Cancer Center in Tampa, FL on the 24th of March. While I was waiting for my visit, I had a recent bone scan which shows another tumor in my skull which has recently appeared in the last 2 months. The tumors in my liver have grown twice as large in the last 3 months and I have 3 tumors in my spine.

I wanted to know if anyone has had any treatments for this cancer and had no growth or decrease in growth or any of their tumors. I also wanted to know if anyone has a good site on the net about this type of cancer. Even more, are their any websites or communities that support this cancer.

I am not sure how this site takes email, but any replies to my message would be greatly appreciate to my personal email address of iggydesign @ hotmail . com as well as any posts to this site.

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