CancerCompass message board discussion started by AKASHA on 4/23/2008 http://www.cancercompass.com/message-board/message/all,23358,0.htm Sat, 30 Aug 2008 00:00:00 GMT Sat, 30 Aug 2008 00:00:00 GMT http://backend.userland.com/rss RSS.NET: http://www.rssdotnet.com/ I have neuroendocrine tumor,today i was told there is no-one in maui hi who can help me,i need to no where i can go to get help right away,i am very sick,my inc,only pays in hi so i don't have any money to get help,does anyone anywhere no where i can get help,in an country does not matter,all i know is they cant help me in maui hi..please help me if you can. AKASHA Wed, 23 Apr 2008 00:00:00 GMT Contact PanCan right away and see if they can give you some ideas of where to go. (  www.pancan.org    ) There is a toll free number on their website to and you can call and talk to someone there.  Also post your question on the Johns Hopkins PC Chat Board.  It has a lot more people on it and there may be someone on there who can tell you the nearest place to go.  http://pathology.jhu.edu/pancreas_chat/ " target="_blank" rel="nofollow">http://pathology.jhu.edu/pancreas_chat/ Good luck and stay strong.   The prognosis for neuroendocrine is usually better than for adenocarcinoma, so that is good for you. I posted this a few days ago on this board, I'm copying it to you again.  Found the following on the Johns Hopkins Chat Board and found it real useful..............  ( http://pathology.jhu.edu/pancreas_chat/ " target="_blank" rel="nofollow">http://pathology.jhu.edu/pancreas_chat/ ) I find this particularly appropriate now because at the recent PanCan meeting in Philadelphia they gave out the statistic that 72% of people who are eligible for surgery aren't even offered it. Get a second opinion at a minimum, and possibly a third.   This was posted over and over again for newbies. Hopes this will help. 'GET A SECOND OPINION' MESSAGE, Newbies come onto this list every week. Here is my standard GET A SECOND andor THIRD opinion after a diagnosis of pancreatic cancer. Why? Read the message and you'll understand. There is a helpful docs list andchemo combos at the bottom of this message. There are many well meaning, hard working doctors out there, but not one ofthem is 'God'. None of them can truly predict how a patient will do, and none of themshould. Some do better than others for no discernible reasons. Call PanCan, get info, arm yourself with info, and get a second opinion NOW.PanCan is your best source of compassionate 'ears' and you can talk to themtoll free at 877-272-6226. There are great docs/oncologists out there treating many patients, but manydon't know a lot about the specifics of treating pancreatic cancer. YOU needto see docs/oncologists who have experience in treating pancreatic cancer!Oncologists at smaller institutions seem to be less experienced withpancreatic cancer. Find the BEST doc for you or your relative or whoever issuffering from this awful cancer. A positive 'fighting' attitude has an effect on how well a patient feels anddoes. Cancer is cancer. It's not good, but people can do well on chemo withrelatively few side effects. The quality of life is worth the try. Good nutrition is VERY important to the person fighting this cancer. If theyare undernourished from the cancer, see a NUTRITIONIST with specificexperience dealing with digestive tract cancers. These cancers cause morecachexia than other cancers. A patient who is undernourished and dehydratedis going to have a harder time with treatment. Get calories into the patienthowever you can. Get enough fluids into them also.  PC patients need to get second opinions at HIGH VOLUME HOSPITALS where theysee a lot of pancreatic cancer patients. Don't just go to some local guy,just because he/she is close by. And if you are helping an older relative get the latest care, good luck. Manytimes they take whatever their 'trusted doc' says as GOSPEL TRUTH. They maynot want to 'hurt the doctors feelings' by going for second opinions. I haveno answer for that situation. Sometimes you have to 'go over their heads'.Eventually, they have to make their own decisions, but you CAN help them tomake a better, more informed, more professional opinion. A PC patient can get a second opinion far from home and have recommendedchemo administered by their local onc. The very scary thing about pancreatic cancer is the almost complete lack ofsymptoms in many cases. Many if not most patients have NO symptoms at allUNTIL the cancer is advanced. Many times the first symptom is jaundice,'cause the tumor has squeezed the bile duct shut. You should get a second opinion and go from there. DON'T read statistics. The statistics are based on PAST treatments and arenot totally accurate. If caught early enough, even if not operable,pancreatic cancer patients have more options for chemo that is increasing thequality of life as well as the length of life. The side effects from chemohave been controlled in most patients so that they can continue living theirlives, going to work, to school, to whatever. Here is a list of docs. Theseare not recommendations of any or all of these docs, only a suggestion for astarting point.    SURGEONS WHO DO WHIPPLES AND HAVE BEEN SUGGESTED BY PEOPLE ON THE JOHNSHOPKINS PANCREAS CHAT LIST---- AT THE END OF THIS DOCS LIST, IS A SEPARATE SURGEONS LIST OF DOCS WHO DO ORCAN DO VEIN/ARTERY RESECTION WITH A WHIPPLE OR WHO WILL OR CAN WORK WITH AVASCULAR SPECIALIST ON A DIFFICULT WHIPPLE. These 'vein docs' are probably also on the main list that follows directlybelow.   ARKANSAS Dr. John C. Jones in Little Rock, Arkansas (surgeon) CALIFORNIA Dr.Linda Sher at USC, Los Angeles (surgeon, does vein/artery involved whipples),Dr. Rick Selby at USC (surgeon- does vein/artery involved whipples ), Dr. RodMateo at USC (surgeon, does vein/artery involved whipples), Dr. Yuri Genyk atUSC (surgeon, does vein/artery involved whipples) Dr. Howard A. Reber-prof ofpancreatic surgery- UCLA-southern CA (surgeon),Dr. Kimberly Kirkwood, UCSF(surgeon) Dr. Gagandeep Singh, surgeon who does vein/artery resection,laparoscopic whipples, and robotic surgery. He is at the John Wayne CancerInstitute in Santa Monica, CA.  FLORIDA Dr. Emmanuel Zervos M.D. Tampa General (surgeon), Dr. Richard C.Karl, Tampa General-Moffit (surgeon), Dr. Joe Levi at U of Miami SylvesterCancer Center-(surgeon), Dr. Alexander Rosemurgy- Univ of SouthFlorida-Moffit (surgeon - does vein/artery involved whipples), Dr. Mokenge P.Malafa, University of South Florida-Moffit (surgeon), Dr. Steven N. Hochwald,Shands Hospital, Gainesville, Fl(surgeon) GEORGIA Dr. Charles Staley of EmoryUniversity in Atlanta (surgeon) ILLINOIS Dr. Stephen Sener, EvanstonNorthwestern Healthcare, (surgeon), Dr. Alexander Doolas. Rush UniversityChicago, (surgeon), Dr. Richard A Prinz, - Rush University Chicago,(surgeon),Dr. Jeffrey Matthews, University of Chicago (Surgeon), Dr Kevin Roggin,University of Chicago (surgeon), Dr. Mark Talamonti- Evanston NorthwesternHospital (surgeon - does vein/artery involved whipples), Dr. StephenMarshall, St. Francis Hosp., Peoria (surgeon - does vein/artery involvedwhipples) INDIANA Dr. Keith Lillemoe at Indiana University HospitalIndianapolis (surgeon - does vein/artery involved whipples), Dr. Dale Rouch,Methodist Hospital, Indianapolis (does surgery with vein resection) MARYLANDDr. Kurtis Campbell, JHH, surgeon (does vein resection?), Dr. ChristopherWolfgang, Johns Hopkins Hospital (surgeon) MASSACHUSETTS Dr. CarlosFernandez-del Castillo-Mass General (surgeon), Dr. Andrew Warshaw-MassGeneral- (surgeon), Dr. Mark Callery, Beth Israel Med Center, Boston617-667-3798, (surgeon), Sarah P. Thayer MD-Mass General - (surgeon)MINNESOTA Dr. Selwyn Vickers, Univ. of Minnesota (surgeon) MISSOURI Dr.StevenStrasberg, Barnes Jewish, St. Louis (surgeon) Dr. David Linehan, BarnesJewish, St. Louis (surgeon ) NEW HAMPSHIRE Dr. Tom Colacchio, DartmouthHMC(New Hamp.) surgeon) NEW YORK Dr. John Chabot, Columbia-PresbyterianHospital-New York (surgeon - does vein/artery involved whipples), Dr. LukeSchoeniger 585-273-4713 Rochester Strong (surgeon), Dr. James Peacock585-275-8229 Rochester Strong (surgeon), Dr. David Krush 585- 275-5027Rochester Strong (surgeon), Dr. Yuman Fong at Sloan Kettering (surgeon), Dr.Daniel Coit at Sloan Kettering (surgeon), Dr. Ronald DeMatteo, SloanKettering, (surgeon), Dr. John Allendorf, Columbia Presbyterian,New York(surgeon), Dr. Michael Lieberman, New York Presbyterian, (surgeon)Dr. WilliamJarnagin, Sloan Kettering NYC (surgeon)  OHIO Dr. Syed Ahmad, Univ of Cincinati, (surgeon), Dr. Jeffrey Matthews, Univof Cincinnati, surgeon, Dr. Matthew Walsh at the Cleveland Clinic Foundation.(surgeon 3-4 whipples per week), Dr. Andrew Lowy, Univ of Cincinnati, surgeon OKLAHOMA Dr. Nicolas Jabbour, surgeon at the INTEGRIS Nazih Zuhdi TranplantInstitute in Oklahoma City. He specializes in bloodless surgerical procedures(transfusion-free medicine and surgery). OREGON Dr. Kevin Billingsley, surgeon, Oregon Health & Science, Port,OR, Dr.Christopher Lim Portland, OR- surgeon, Dr. Brett Sheppard, Oregon Health andScience University (surgeon-does whipple with vein resection) PENNSYLVANIADr. Charles Yeo-Jefferson University Hospital in Philadelphia (surgeon), Dr.Ernest Rosato, Univ of Pennsylvania, Philadelphia (surgeon -100surgeries/year), Dr Jeffery Drebin University of Penn in Philadelphia(surgeon-researcher) TENNESSEE Dr. Nipun Merchant, Vanderbilt, Nashville, TNsurgeon TEXAS Dr. Tom Shires, III at Presbyterian Hospital, Dallas (surgeon), Dr.Rojan Jeyarajah Methodist Hospital, Dallas (surgeon), Dr. Joe Kuhn, BaylorMedical, Dallas (surgeon), Dr. John Preskitt, Baylor Medical, Dallas(surgeon), Dr. Ed Livingston, Southwestern Medical (surgeon), Dr. Douglas B.Evans, M.D. Anderson (surgeon - does vein/artery involved whipples) Oncologists / Radiologists by State CALIFORNIA Dr. Margaret Tempero at UCSFin San Francisco (oncologist), Dr. George Fisher Stanford (oncologist), Dr.James Ford, Stanford (oncologist), Dr. Karyn Goodman, Stanford(radiologist/CyberKnife specialty), Dr. Jeffrey A. Norton, Stanford(oncologist), Dr. Heinz-Josef Lenz, USC (oncologist), Dr. William Isacoff,UCLA (oncologist) FLORIDA Dr. Robert Marsh, Shands Hospital, Gainesville, Fl(oncologist/specializes in PC), ILLINOIS Dr. Hedy Kindler, University ofChicago, (oncologist, clinical trials research), Dr. Mary Mulcahy, LurieCancer Center-Northwestern Chicago, (oncologist), Dr. Chadi Nabhan, LutheranGeneral, Park Ridge, (oncologist) LOUISIANA Dr. Joyce E. Feagin -Willis-Knighton. 800-241-3716, Shreveport, La(oncologist) MARYLAND Dr. Dan Laheru- Johns Hopkins -Baltimore (oncologist),Dr. Ralph Hruban-Johns Hopkins-Baltimore (tumor registry), Dr. BrianQuinn-Fox Chase Cancer Center at Hunterdon Medical Center(oncologist)MASSACHUSETTS Dr. David Ryan-Mass General-oncologist, Dr. Jeffrey MyerhardtiDana Farber, Boston (Oncologist) MICHIGAN Dr. Philip A. Philip, KarmanosCancer Center, Detroit (onc) MINNESOTA Dr. Edward Greeno @ the University ofMinnesota (oncologist) NEW YORK Dr. Robert Fine, Columbia Presbyterian -NewYork (oncologist), Dr. Howard Bruckner-Cabrini Medical Center, NYC(oncologist- new views on chemo combos), Dr Leon Landau (oncologist) of DobbsFerry and the Bronx, NY, Dr. Joseph Ruggiero, New York Presbyterian - CornellMedical Center (oncologist), Dr. Allyson Ocean at New York Presbyterian -Cornell Medical Center.(oncologist), Dr. Roger Keresztes, 212-746-2075,NewYork Presbyterian (oncologist), OHIO Dr. Michael N. Neuss Cincinnati,oncologist, Dr. David Waterhouse, Cincinnati,(513-891-4800) oncologist OREGONDr. Charles Blanke, Oregon Health & Science, Port,OR (Oncologist.)PENNSYLVANIA Dr. Daniel G. Haller Univ. of Penn, (oncologist) TEXAS Dr.Charles Abbruzze-MD Anderson Houston (oncologist) WASHINGTON Dr. VincentPicozzi-Virginia Mason, Seattle (oncologist with aggressive views on chemo)GASTROENTEROLOGISTS NEW YORK Dr. Edward Lebovics Vahalla, NY (GI doc),PENNSYLVANIA Dr. Thomas Kowalski Thomas Jefferson- Philadelphia,(gi doc-verygood with stents), Dr. Stephen Kaufman, Abington,(Gastrointestinal Assoc.,Inc ? VEIN DOCS-- WHO DO WHIPPLES WITH BLOOD VESSEL INVOLVMENT. Docs who are good at this extra complicated surgery involving blood vessels Dr. Rick Selby, USC, Los Angeles, Dr. Keith Lillimoe, Indiana University Hospital, Indianapolis Dr. Mark Talamonti, Evanston Northwestern Hospital, Evanston, IL Dr. Kurtis Campbell, Johns Hopkins, Baltimore Dr. John Cameron, Johns Hopkins, Baltimore Dr. John Chabot, Columbia University Hospital, New York Dr. Alexander Rosemurgy, University of South Florida, Tampa Dr. Dale Rouch, Methodist Hospital, Indianapolis Dr. Brett Sheppard, Oregon Health and Science University Dr Jeffery Drebin University of Penn in Philadelphia Dr. Sharon Weber at the UW hospital in Madison, WI. Dr. Paul Hansen, Legacy Cancer services, Portland Oregon Dr. David Kooby at Emory Clinic - Atl does vein resection and said heperforms 2-3 whipples/distals a week.  Dr Schoeniger (trained at Johns Hopkins 20 years ago, has done 100 's ofWhipple, plus at least 21 Whipples with vein involvement, along with Dr KarlIllig (head of vascular surgery at Strong Memorial hospital). Dr. Scott King: St. Francis Hospital in Memphis, TN. Dr. Gagandeep Singh, surgeon who does vein/artery resection, laparoscopicwhipples, and robotic surgery. He is at the John Wayne Cancer Institute inSanta Monica, CA. In Oklahoma is Dr. Nicolas Jabbour, surgeon at the INTEGRIS Nazih ZuhdiTranplant Institute in Oklahoma City. He specializes in bloodless surgericalprocedures (transfusion-free medicine and surgery).   dmc1944 Thu, 24 Apr 2008 00:00:00 GMT