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For Newbies was posted on 04/07/2008 09:40 am by Carenurse
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 and or THIRD opinion after a diagnosis of pancreatic cancer. Why? Read the message and you'll understand. There is a helpful docs list and chemo combos at the bottom of this message.
There are many well meaning, hard working doctors out there, but not one of them is 'God'.
None of them can truly predict how a patient will do, and none of them should.
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 them toll free at 877-272-6226.
There are great docs/oncologists out there treating many patients, but many don't know a lot about the specifics of treating pancreatic cancer. YOU need to see docs/oncologists who have experience in treating pancreatic cancer! Oncologists at smaller institutions seem to be less experienced with pancreatic cancer. Find the BEST doc for you or your relative or whoever is suffering from this awful cancer.
A positive 'fighting' attitude has an effect on how well a patient feels and does. Cancer is cancer. It's not good, but people can do well on chemo with relatively few side effects. The quality of life is worth the try.
Good nutrition is VERY important to the person fighting this cancer. If they are undernourished from the cancer, see a NUTRITIONIST with specific experience dealing with digestive tract cancers. These cancers cause more cachexia than other cancers. A patient who is undernourished and dehydrated is going to have a harder time with treatment. Get calories into the patient however you can. Get enough fluids into them also.
PC patients need to get second opinions at HIGH VOLUME HOSPITALS where they see 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. Many times they take whatever their 'trusted doc' says as GOSPEL TRUTH. They may not want to 'hurt the doctors feelings' by going for second opinions. I have no 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 to make a better, more informed, more professional opinion.
A PC patient can get a second opinion far from home and have recommended chemo administered by their local onc.
The very scary thing about pancreatic cancer is the almost complete lack of symptoms in many cases. Many if not most patients have NO symptoms at all UNTIL 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 are not totally accurate. If caught early enough, even if not operable, pancreatic cancer patients have more options for chemo that is increasing the quality of life as well as the length of life. The side effects from chemo have been controlled in most patients so that they can continue living their lives, going to work, to school, to whatever. Here is a list of docs. These are not recommendations of any or all of these docs, only a suggestion for a starting point.
SURGEONS WHO DO WHIPPLES AND HAVE BEEN SUGGESTED BY PEOPLE ON THE JOHNS HOPKINS PANCREAS CHAT LIST----
*AT THE END OF THIS DOCS LIST, IS A SEPARATE SURGEONS LIST OF DOCS WHO DO OR CAN DO VEIN/ARTERY RESECTION WITH A WHIPPLE OR WHO WILL OR CAN WORK WITH A VASCULAR SPECIALIST ON A DIFFICULT WHIPPLE.
**These 'vein docs' are probably also on the main list that follows directly below.
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. Rod Mateo at USC (surgeon, does vein/artery involved whipples), Dr. Yuri Genyk at USC (surgeon, does vein/artery involved whipples) Dr. Howard A. Reber-prof of pancreatic 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 Cancer Institute 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 Sylvester Cancer Center-(surgeon), Dr. Alexander Rosemurgy- Univ of South Florida-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 Emory University in Atlanta (surgeon)
ILLINOIS Dr. Stephen Sener, Evanston Northwestern Healthcare, (surgeon), Dr. Alexander Doolas. Rush University Chicago, (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 Northwestern Hospital (surgeon - does vein/artery involved whipples), Dr. Stephen Marshall, St. Francis Hosp., Peoria (surgeon - does vein/artery involved whipples)
INDIANA Dr. Keith Lillemoe at Indiana University Hospital Indianapolis (surgeon - does vein/artery involved whipples), Dr. Dale Rouch, Methodist Hospital, Indianapolis (does surgery with vein resection)
MARYLAND Dr. Kurtis Campbell, JHH, surgeon (does vein resection?), Dr. Christopher Wolfgang, Johns Hopkins Hospital (surgeon)
MASSACHUSETTS Dr. Carlos Fernandez-del Castillo-Mass General (surgeon), Dr. Andrew Warshaw-Mass General- (surgeon), Dr. Mark Callery, Beth Israel Med Center, Boston 617-667-3798, (surgeon), Sarah P. Thayer MD-Mass General - (surgeon)
MINNESOTA Dr. Selwyn Vickers, Univ. of Minnesota (surgeon) MISSOURI Dr.Steven Strasberg, Barnes Jewish, St. Louis (surgeon) Dr. David Linehan, Barnes Jewish, St. Louis (surgeon )
NEW HAMPSHIRE Dr. Tom Colacchio, Dartmouth HMC(New Hamp.) surgeon)
NEW YORK Dr. John Chabot, Columbia-Presbyterian Hospital-New York (surgeon - does vein/artery involved whipples), Dr. Luke Schoeniger 585-273-4713 Rochester Strong (surgeon), Dr. James Peacock 585-275-8229 Rochester Strong (surgeon), Dr. David Krush 585- 275-5027 Rochester Strong (surgeon), Dr. Yuman Fong at Sloan Kettering (surgeon), Dr. Daniel Coit at Sloan Kettering (surgeon), Dr. Ronald DeMatteo, Sloan Kettering, (surgeon), Dr. John Allendorf, Columbia Presbyterian,New York (surgeon), Dr. Michael Lieberman, New York Presbyterian, (surgeon)Dr. William Jarnagin, Sloan Kettering NYC (surgeon)
OHIO Dr. Syed Ahmad, Univ of Cincinati, (surgeon), Dr. Jeffrey Matthews, Univ of 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 Tranplant Institute 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 and Science University (surgeon-does whipple with vein resection)
PENNSYLVANIA Dr. Charles Yeo-Jefferson University Hospital in Philadelphia (surgeon), Dr. Ernest Rosato, Univ of Pennsylvania, Philadelphia (surgeon -100 surgeries/year), Dr Jeffery Drebin University of Penn in Philadelphia (surgeon-researcher)
TENNESSEE Dr. Nipun Merchant, Vanderbilt, Nashville, TN surgeon
TEXAS Dr. Tom Shires, III at Presbyterian Hospital, Dallas (surgeon), Dr. Rojan Jeyarajah Methodist Hospital, Dallas (surgeon), Dr. Joe Kuhn, Baylor Medical, 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) Dr. Jeffrey E. Lee, M D Anderson (surgeon-also does vein/artery involved whipples)
ONCOLOGISTS/RADIOLOGISTS BY STATE:
CALIFORNIA Dr. Margaret Tempero at UCSF in 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 of Chicago, (oncologist, clinical trials research), Dr. Mary Mulcahy, Lurie Cancer Center-Northwestern Chicago, (oncologist), Dr. Chadi Nabhan, Lutheran General, 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. Brian Quinn-Fox Chase Cancer Center at Hunterdon Medical Center(oncologist)
MASSACHUSETTS Dr. David Ryan-Mass General-oncologist, Dr. Jeffrey Myerhardti Dana Farber, Boston (Oncologist) MICHIGAN Dr. Philip A. Philip, Karmanos Cancer Center, Detroit (onc)
MINNESOTA Dr. Edward Greeno @ the University of Minnesota (oncologist)
NEW YORK Dr. Robert Fine, Columbia Presbyterian -New York (oncologist), Dr. Howard Bruckner-Cabrini Medical Center, NYC (oncologist- new views on chemo combos), Dr Leon Landau (oncologist) of Dobbs Ferry and the Bronx, NY, Dr. Joseph Ruggiero, New York Presbyterian - Cornell Medical Center (oncologist), Dr. Allyson Ocean at New York Presbyterian - Cornell Medical Center.(oncologist), Dr. Roger Keresztes, 212-746-2075,New York Presbyterian (oncologist), OHIO Dr. Michael N. Neuss Cincinnati, oncologist, Dr. David Waterhouse, Cincinnati,(513-891-4800) oncologist
OREGON Dr. Charles Blanke, Oregon Health & Science, Port,OR (Oncologist.)
PENNSYLVANIA Dr. Daniel G. Haller Univ. of Penn, (oncologist)
TEXAS Dr. Charles Abbruzze-M D Anderson, Houston (oncologist); Dr. Gauri Varadahachary - M D Anderson, Houston (oncologist); Dr. Christopher Crane - M D Anderson, Houston (radiation oncology)
WASHINGTON Dr. Vincent Picozzi-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-very good 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,CA; Dr. Gagandeep Singh, surgeon who does vein/artery resection, laparoscopic whipples, and robotic surgery - John Wayne Cancer Institute in Santa Monica, CA. ******* Dr. Mark Talamonti, Evanston Northwestern Hospital, Evanston, IL ******* Dr. Kurtis Campbell, Johns Hopkins, Baltimore Dr. John Cameron, Johns Hopkins, Baltimore ****** Dr. Alexander Rosemurgy, University of South Florida, Tampa ******* Dr. Dale Rouch, Methodist Hospital, Indianapolis; Dr. Keith Lillimoe, Indiana University Hospital, Indianapolis ******** Dr. Brett Sheppard, Oregon Health and Science University; Dr. Paul Hansen, Legacy Cancer services, Portland Oregon ******** Dr Jeffery Drebin University of Penn in Philadelphia ******** Dr. Sharon Weber at the UW hospital in Madison, WI. ******** Dr. David Kooby at Emory Clinic - Atl does vein resection and said he performs 2-3 whipples/distals a week. ******** Dr. John Chabot, Columbia University Hospital, New York; Dr Schoeniger (trained at Johns Hopkins 20 years ago, has done 100 's of Whipple, plus at least 21 Whipples with vein involvement, along with Dr Karl Illig (head of vascular surgery at Strong Memorial hospital)- Rochester, NY ********* Dr. Scott King: St. Francis Hospital in Memphis, TN. ********* In Oklahoma is Dr. Nicolas Jabbour, surgeon at the INTEGRIS Nazih Zuhdi Tranplant Institute in Oklahoma City. He specializes in bloodless surgerical procedures (transfusion-free medicine and surgery). ********* Dr. Jeffrey E. Lee, M D Anderson, Houston does (Whipples and vein resections) very experienced; very caring.
Here is a list of chemo combos. Typically, conservative oncologists will use
gemcitabine or gemcitabine/tarceva as first-line treatments because these
protocols have been approved for PC by the FDA. More aggressive oncologists
will use platinum drugs (cisplatin or oxaliplatin) in combination with
gemcitabine or gemcitabine/tarceva as first-line treatments. Some will use
GTX (gemcitabine/taxotere/xeloda) as either a first-line or second-line
treatment. Other drug combinations include PEFG
(cisplatin/epirubicin/5-fluorouracil/gemcitabine), GFLIP (gemcitabine,
fluorouracil leucovorin, irinotecan and cisplatin) or FOLFOX (5-fluorouracil,
oxaliplatin, leucovorin). Progressive/aggressive oncologists will treat PC
with the following chemotherapeutic drug combinations: First-line treatment:
Platinum drugs (cisplatin or oxaliplatin) in combination with gemcitabine or
gemcitabine/tarceva. First or second-line treatment: GTX: gemcitabine,
taxotere, xeloda Second or third-line treatments: PEFG: cisplatin,
epirubicin, 5-fluorouracil, gemcitabine FOLFOX: 5-fluorouracil, oxaliplatin,
leucovorin GFLIP: gemcitabine, 5-FU, lLeucovorin, irinotecan, cisplatin The
list is not inclusive, since many aggressive US oncologists will use
variations of the above combinations to find something that works. Platinum
drugs (cisplatin or oxaliplatin) in combination with gemcitabine or
gemcitabine/tarceva. GTX: gemcitabine, taxotere, xeloda PEFG: cisplatin,
epirubicin, 5-fluorouracil, gemcitabine FOLFOX: 5-fluorouracil, oxaliplatin,
leucovorin GFLIP: gemcitabine, 5-FU, lLeucovorin, irinotecan, cisplatin
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