On 10/3/2007 Malea wrote:
Hello Malea, I hope this letter finds you in good health. My name is Douglas and I live in Costa Rica. I had a neuroendocrine tumor removed from the head of my pancreas in February of 2007. It was diagnosed as a non functioning type of neuroendocrine tumor. 18 month after post op I started having some stomach pains and was diagnosed with ulcers, I was placed on nexium and the pain subsided. a month and a half later I developed the pains again however they were more severe. I went in for another endosope and the ulcers had healed. Then had another cat scan which indicated that I had 3 new tumors. one in my liver. I was not placed on a chemo therapy program by my original doctor surgeon and was then recommended to an oncologyst that placed me on the medication that Dr. Kvols is currently using. A combination of Temodal and Xeloda. Since the treatment started I have been fine, free of pain and have gained the weight that I lost from not eating during the episode with the ulcers. My team both the surgeon, and oncologist have both met Dr. Kvols on occasions at medical seminars. They have recommended me to him. To be honest I have had a difficult time dealing with all of the red tape with the Moffitt Cancer Center in trying to set up and appointment with the Doctor Kvols. Because I am an international patient and paying out of pocket for my treatment the want a huge deposit of money. What I only need is to have the Dr. review my case and perhaps have another biopsy analysis on a sample of my original tumor. I have offered to pay this up front with a deposit and to pay in advance for any additional work Dr. Kvols would recommend. I keep going around and around with a puerta rican women in the International Finance department that hardly speaks english, I have more success speaking with her in spanish if you can believe it. What I need is to obtain a phone number and a contact and email for Dr. Kvols office so that I may contact his nurse or even if I could send him an email directly. Your message says that you went to the Erasmus Medical Center in Holland. There your received a Lu-177 Radio-Isotope through an IV which shrunk my tumors and saved your life. Could you help me by telling me a bit more about this program and is it still not available in the U.S Were you ever placed on the same medications that I am taking. I read an abstract that Dr. Kvols is running a trail program with this two medications chemo for patients like ourselfs. I wouild appreciate any information that you could send me regarding your experience and want to wish you well and thank you for any of your valued comments. I can be reached directly @ kdmper@racsa.co.cr
Hi - I was diagnosed with Pancreatic Neuroendocrine Cancer in January of 2005. Neuroendocrine tumors are in the family of carcinoid tumors. I had a small grapefruit size tumor on the tail of my pancreas removed by Dr. Malafa at the H.Lee Moffitt Cancer Center in Tampa, Florida. I also had Radio Frequency Ablation on several tumors on my liver. My oncologist, Dr. Larry Kvols had me go through two blasts of Chemo - Cisplatin and Etoposide, but they did not affect the tumors, but maybe killed some of the cancer cells in my blood. I then went to the Erasmus Medical Center in Holland. There I received a Lu-177 Radio-Isotope through an IV which shrunk my tumors and saved my life. This treatment is not available in the U.S. as of yet. God led me to the H.Lee Moffitt Cancer Center in Tampa where Dr. Larry Kvols helped save my life through many modalities and treatments. All I can tell you is that it's all worth going through because life is so fantastic now. Never give up hope I have learned. The doctors are learning new things EVERY day. If you are not strong enough to search for the best care, have someone do this for you. Don't delay.