Pancreatic Cancer Group: Introduce yourself and connect with others

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.

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

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

Good news! The tumor shrunk from 9 cm to 6.4cm. and also shrinkage in the 3 lymph nodes. The doctor was encouraged and we were thrilled. I just finished 5th treatment- oxaliplatin, irinotecan and 5FU. My doc does not prescribe Leucavorin. I have had very little nausea and have a good appetite. My main side effect is the cold sensation with my hands and neuropathy. I have some tingling in my feet. I do have some intense jaw pain when I take a first bite that fades as I finish chewing. This is manageable pain at this point. My cheeks have a sensation that feels like I’ve had dental work/novacain that comes and goes. Anyone else get that?
The plan now is retest in 2 months, after 4 more treatments, and if still shrinking, switch to a chemo pill, Mon thru Friday. Has anyone else had this similar plan of treatment?

I also wanted to add that my tumor is in the tail of the pancreas and has spread out of the pancreas also. It seems like most everyone is saying their tumors are in the head?

Couldn't agree more with you. Keep in mind that pancreatic cancer care is a "package deal", all areas of expertise may be needed in your care since very few cancers are cured with surgery alone.

Sorry, just saw this.

I went to the National Cancer Center in Mission Viejo for my surgeon and oncologist.

Surgery was performed at Providence Hospital in Mission Viejo.

Hi, Julie:
This comment woke me up: "My cheeks have a sensation that feels like I’ve had dental work/novacain that comes and goes. Anyone else get that?"

Tell your team!

I also had oxaliplatin with my chemo and some people (as I understand it - I am NOT a medical pro), depending on dosage amounts, will have greater susceptibility to neuropathy. Everyone reacts differently. Starting with my 7th infusion I began to feel some mouth and tongue numbness in addition to the neuropathy in my feet and hands. I forgot to mention it to my PA prior to my 8th infusion (brain fog). Shortly after my 8th infusion I answered a phone call from a friend and found I was not able to speak clearly. I simply couldn't get my tongue to work. Again, I completely forgot about it as the worst of the symptoms would subside a bit after about 10 days. When speaking with my PA prior to my 9th infusion, I apologized for not speaking as clearly as I should. They promptly stopped that drug as part of "my" treatment. I'm not saying they will do that for you, again, "everyone" is different and I have no idea if what you are getting is what I received. But every one needs to track and note any and all symptoms, reactions to their therapy and inform their team.

What I have learned: With any odd, strange, uncomfortable symptom I had to WRITE IT DOWN! I had to tape those notes to the back of my phone! Seriously. It's really important to clearly let them know how you are responding. I should had done that when I started therapy. Also, regarding neuropathy, check to see how your feet are doing beyond just walking around. Flex your feet in all directions to see if the neuropathy is affecting any lower leg muscles. Sometimes just walking around doesn't tell the entire story and your team needs to know how "your" body is responding.

Wishing you the best with your treatment. At times it seems there's just too much to deal with, but somehow we do just that.

Julie,
My tumor is in the head of the pancreas. I also had intense jaw pain like you described. During my 2nd chemo infusion, I had cramping in my hands and cramping in my cheek muscles (was hard to form words when talking). From the beginning of my Folfirinox chemo treatments, my oncologist reduced my oxaliplatin to 50% because of it. At my 8th chemo, I just didn't feel like I could continue the oxaliplatin because of the increasing jaw pain, and increasing neuropathy in my feet, so I did the Folfirinox without the oxaliplatin. For my 9th chemo, they switched my chemo plan to gemzar/Abraxane. (They didn't want to continue giving me the Folfirinox without the oxaliplatin) The side effects of the gemzar/Abraxane have been much less for me-I don't know if it was the right decision to stop the oxaliplatin, but it was a decision I felt I needed to make at the time. My C19 has continued to go down with the Gemzar/Abraxane. I have one more treatment, before surgery. (12 total treatments). I am very nervous about surgery. My 12th chemo is Jan 18th. I will have CT and PET scan on Jan 30, 31.
Wishing you the best.

Happy to hear that you have had a response to treatment. I had minimal symptoms from neuropathy when the oxaliplatin was stopped due to a severe allergic reaction during my 11th treatment. . The neuropathy kept getting worse and involved my hands, I can live with it. I have to be careful when driving and I only drive short distances during daytime hours. Knowing that it greatly helped my tumor to shrink and that I had become candidate for surgery it seems like a small price to pay. My youngersister, also BRCA1 carrier, unfortunately has not had such great results. She has esophageal cancer and did not have a good response to the initial chemo which contained oxaliplatin and 5-FU. Her tumor was first diagnosed when she had an abdominal mass seen on screening for pancreatic cancer. Her initial evaluation at the University of Michigan leaves much to be desired. On the screening ultrasound guided endoscopy for pancreatic cancer, the cancer of the esophagus was missed. We were told that the sonographic equipment wasn't designed for that purpose. The fellow did the endoscopy. When an esophageal mass was seen on a PET scan, the endoscopy was repeated this time by the attending physician and the cancer was seen. Her chemo was changed because of enlargement of the primary tumor and metastases to the liver. The neuropathy progressed into her hands. This significantly has decreased her quality of life and ability to play her harp. She has been a professional harpist. Not only was her livelihood gone, but her joy in playing music has been severely compromised. Breaks my heart. She has received a remarkable lack of compassion and respect. At MSKCC I have always received top of the line care, respect and compassion. It grieves me to see her being treated the way she has been, more than myself. She will be reevaluated at the end of the week to see how she has done with her second line chemo. Whatever is decided about her progress she is coming to visit me and will see a expert oncologist at the same institution Memorial Sloan Kettering Cancer Center. Even if the recommendation is just keep doing what you are doing, or there is nothing more to be done, she will have the knowledge that she did seek out the best treatment she could. I will have the blessing of seeing her again. Keep her in your thoughts and prayers this week as she is getting ready to be scanned again and I know she is highly anxious about the results of the scan. Please send a few prayers for her.