Pancreatic Cancer Group: Introduce yourself and connect with others
Welcome to the Pancreatic Cancer group on Mayo Clinic Connect.
This is a welcoming, safe place where you can meet people living with pancreatic cancer or caring for someone with pancreatic cancer. Let’s learn from each other and share stories about living well with cancer, coping with the challenges and offering tips.
I’m Colleen, and I’m the moderator of this group, and Community Director of Connect. Chances are you’ll to be greeted by fellow members and volunteer patient Mentors, when you post to this group. Learn more about Moderators and Volunteer Mentors on Connect.
We look forward to welcoming you and introducing you to other members. Feel free to browse the topics or start a new one.
Pull up a chair. Let's start with introductions.
When were you diagnosed with pancreatic cancer? What treatments have you had? How are you doing?
Interested in more discussions like this? Go to the Pancreatic Cancer Support Group.
John Chabot, MD
https://www.cancer.columbia.edu/profile/john-chabot-md
Rodelyn Zapata is his administrative assistant
(212) 305-9467
rmz2102@cumc.columbia.edu
https://www.facebook.com/pancreascenter/
Christopher Wolfgang, MD
https://nyulangone.org/doctors/1770519761/christopher-wolfgang
Thank you
I didn't know about the surgeons in NY
They are much closer to where we live
The surgeon,Dr Clancy at Brigham & Women's said he would not operate because of the vascular involvement
I wonder how to get in touch with the 2 surgeons in NY.Maybe I'll try their website and thank you so much for this information
The top five Whipple surgeons for vascular involvement in the US are Mark Truty at the Mayo Clinic, Christopher Wolfgang at NYU-Langone Medical Center and John Chabot who is Chief of Surgery at the Pancreas Center of Columbia Presbyterian Medical Center-both in NYC. Douglas Evans at Medical College of Wisconsin/Froedert Hospital in Milwaukee and Dr. Matthew Katz at MD Anderson who will perform the Whipple in rare instances on stage IV patients that are younger and meet stringent criteria.
They call it FOLFIRINOX at 100% to start and see if he tolerates it. He also takes Creon. Thank you for your reply.
Hi Julie, I'd like to add my welcome. How did your followup appointment go last week?
Hello there,
My heart goes out to you as you've really had it rough! May I ask which medical group or hospital you were treated at? I live in Orange County, California and was treated at Hoag - not a Center of Excellence and I believe they really messed up my possibilities to be "cancer free" for at least a year or two instead of 4.5 months. Waiting is difficult, and we never know the consequences because there are different versions of the pancreatic mutation; there is a chance it could come back but for how long, no one knows. There are survivors so I hope you are one of the lucky ones! Be your best advocate and read as much as you can about the disease - this site is a very good source of information. I lost 50 lbs in the process, but I did gain 25 back and I'm thankful because it will help me fare well over the next few months. I think everyone should be prepared as far as wills, living trusts, etc. I'm actually in the process of selling my home so that I can ensure and see my children get to enjoy at least some of the money! My advice, be vigilant about your health, knowledegable about the disease, participate in these discussions as we all know exactly what you are going through, and how you feel, and enjoy life to the fullest!
@bceg1969 , I don't know whether to be honored or embarrassed! 😉 lol...
I don't know much about involvement with the mesenteric artery, since my Whipple was a good bit simpler.
Three huge names in the complicated surgery biz are Mark Truty at Mayo in MN, Christopher Wolfgang at NY Langone, and Matthew Katz at MD Anderson.
Plenty of other really good ones around, but you want someone at a pancreatic center of excellence to get the complete, specialized care team on your case for experienced recovery care in the hospital after surgery.
Lots of records and studies show how much better the outcomes are at high-volume centers. Counselors at pancan.org can help you find out how many Whipples a particular center or surgeon does per year. If a procedure other than Whipple is required, their number of Whipples __might__ still be a proxy reflective of related experience, but it would be ideal to find out how much experience they have with the procedure you'd actually be getting.
Wishing you both the best!
Thank you
I'll look at their posts
I think I have seen some of markymark posts
I can use all the support I can get!
It is important to connect with others on the same path you are traveling, @bceg1969. I joined Connect when I was facing my third surgery for a rare form of cancer, neuroendocrine tumors. I was feeling very alone when I was told that I had another surgery ahead of me. Connect helped me so much. I hope it is as much of a help to you and your husband.
As you connect with other long-time survivors of pancreatic cancer, I'm sure you will feel surrounded by support. Some other members who post in this discussion regularly are @stageivsurvivor @markymarkfl @gardenlady1116 as well as others.
I will definitely continue to post
I like being connected to others going through this journey