Found the following on the Johns Hopkins Chat Board and found it real useful.............. ( 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 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)
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-MD Anderson Houston (oncologist) 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,
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 he
performs 2-3 whipples/distals a week.
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).
Dr. Scott King: St. Francis Hospital in Memphis, TN.
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.
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).
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
??