"Renal Carincoid Guy" (RCG)
| Gender | Male |
|---|---|
| Industry | Non-Profit |
| Occupation | NET Cancer- Advanced metastatic disease! delayed by PRRT LU177! |
| Location | United States |
| Links | Wishlist |
| Introduction | This site documents my "JOURNEY" W/NEUROENDOCRINE CARCINOMA-- RENAL CARCINOID CANCER (DX 2002) The blog documents my disease journey w/NETs- surgeries (3+ one in Costa Rica), CUP 2 yrs, treatments,errors,surgeries, liver RFA, many MD&hospitals, 2 clinical trials- (Afinitor-(mTor)+LAR Pazopanib-(VEGF)+LAR), PRRT lu177 (3 rds), imaging w/ CT/PET, O-scans, PET/CTwGA68+FDG, Germany/Europe clinics, insurance, denials, costs and treatments. Questions? smm2367@gmail My formal degree is in Finance however, the last 10 yrs studying NET disease! I have audited CROs and the medical industry prior. I have studied this disease (NETS)IN DETAIL over 10 yrs! Why? TO STAY ALIVE with quality! NOTE: THIS SITE IS NOT SPONSORED EXCEPT FOR READERS. PLS CONSIDER DONATING TO THIS NET WEB SITE/Patient author. Why? I am paying for my cancer therapy (USA Ins! huh!?)and now Europe based GA68/PRRT therapy out of pocket, and in need of help! Donations will be used to help me defray the never ending cost of therapy for this disease and hopefully continue extending my life and publishing on this web site! Note: Pls see Health Disclaimer under INTERESTS! |
| Interests | Health Disclaimer! The information provided on this site should not be construed as personal medical advice or instruction. No action should be taken based solely on the contents of this site. Readers should consult appropriate health professionals on any matter relating to their health and well-being. The information and opinions provided here are believed to be accurate and sound, based on the best judgment available to the authors, but readers who fail to consult appropriate health authorities assume the risk of any injuries. The publisher is not responsible for errors or omissions! My interests are searching ways to delay the end of my life, with quality, from this "god forsaken" NET disease. I have an aggressive form of carcinoid/NET cancer, identified Feb 2002 (oh do I remember that day!). The systemic treatment options are limited overall, less in the USA! Its disappointing I have come to learn but VERY COSTLY! To note, I spend time researching the disease, in detail, and my options/studies, doctors, studies, treatments are all supported with backup unless I note an opinion. MY SAYING "ITS YOUR DISEASE AND YOUR DAMN LIFE, SO "OWN IT""! Become an empowered patient to assist w/your MD team to FIND THE BEST THERAPY, or surgical options FOR YOU! TAKE OWNERSHIP, LEARN to defend yourself from this beast! Don't be afraid to get mad with this! Its personal for me and that is why I am using this medium to post information, esp for information which is not readily available- PRRT, ga68, out of country therapy, clinical trials, md Cconflict of interest, what Md;s and hospitals get paid from pharma, big pharma influence in medicine, Foundations, and the REAL ACTIVITY OF NEW NET DRUGS (worthless...)etc. This site also enables me to network, info share and make new friends. |
| Favorite Movies | A lot of them! |
| Favorite Music | Like trance/electronic devotee & wished everyone in USA loved trance (aka: Electronic Dance Music), the way Europeans sure do!! great to listen, work and relax!. Latin music I love also! Finally, I listen to talk shows on sports and politics plus write and call in at times. |
| Favorite Books | Historical books esp about politics--Reagan, war leaders, WWII and modern day dictators (Trujillo, Fidel, African politics and dictators are of special interest--Amin, Mobuto, Mugabe, Kuanda, the best of all-- Jean-Bedel Bokassa-- check ou "You Tube" under his name see his crowning ceremony! It cost $22MMUSD in 1977 fantastic! Its crazy and paid in full by the French.... Halie Selissie of Ethopia, my favorite Lion King!. Others African dictators I love to read about are Nkrumah (one of the first after independance), Mengistu- who now lives in Zimbawe, probably off the revenue from the LIVE AID concerts well meaning people did. All of these men are interesting and fantastic reading about modern day African leaders, what they have done to destroy and plunder their countries after independance, and the typical traits of all-- brutual, corrupt, unable to relinquish power and typically not very bright, the lone different individual is Mandela, who one day there will be a world wide holiday for this birthday..... Also, love the North Korean Dictator- see him on UTUBE (wears high heels and puffed up hair due to height)! Other recent books I have been reading are "Around Africa on my bicycle" (supposed to be true but, he seems to good shape, and alive, after riding through the Congo and western African countries) and "The fate of Africa" great book about the inhumanity of it all... (why the interest in Africa? dunno? Also, a book that includes my family in CUBA- "WAITING FOR SNOW IN HAVANA" (see chapter 36)! |