Pancreatic Cancer Group: Introduce yourself and connect with others

Hello
I have a tumor that is wrapped around the arteries. Dr Truty at Mayo in Rochester would have done the surgery but I decided not to go ahead with it. At 61 I want to enjoy what time is left for me. To have my pancreas, spleen, and stomach removed would have been too hard on me. I would have been too weak for more chemo if it recurs and it will. I would have constant diarrhea and painful cramps. Not everyone is eligible for the surgery so it’s not a guarantee but worth talking to Dr Truty. He is amazing!

I really had no symptoms. My internist ordered an MRI because I have a history of IBS, diverticulitis, etc.

I feel absolutely fine beyond the stress. No symptoms. I lost my Mom a week ago who was a cancer survivor to age 93. I’m a fighter.

I appreciate this. I have no family locally so I am basically alone physically but have good emotional support.

Hello @nbreeze and welcome to Mayo Connect. If you look at the video in the post above, you will get some good information for how Pancreatic Cancer is treated at Mayo Clinic. Here are some Connect members who were treated at Mayo Clinic, by Dr. Truty, @marciak9 @dubbscopper @momof3gals @ellengalloup @ashley2235 @susan2018

You mentioned that you were just recently diagnosed, @nbreeze. What symptoms were you having that led to the diagnosis? How are you feeling now?

I have just been diagnosed with Pancreatic cancer. I have an appointment scheduled at Moffitt but would like to hear about your experience at Mayo. My husband was treated in MN about 15 years ago and though there was nothing to be done for him it was an excellent experience. I live in Naples, Fl.

@bceg1969, I think you may be referring to Dr. Truty, pancreatic cancer surgeon at Mayo Clinic. I'm tagging a few members who have consulted and been treated by Dr. Truty to share with you, like @marciak9 @dubbscopper @momof3gals @ellengalloup @ashley2235 @susan2018

You may appreciate this video

Many of you have crossed virtual paths with @stageIVsurvivor here in the halls of the pancreatic cancer support group on Mayo Clinic Connect. @hopeful33250 interviewed him for today's featured member spotlight. Learn more about stageivsurvivor and his love of all things Swiss, as well as why advocating for pancreatic cancer patients is important to him.

- Clinical researcher turns patient advocate: Meet @stageivsurvivor https://connect.mayoclinic.org/blog/about-connect/newsfeed-post/clinical-researcher-turns-patient-advocate-meet-stageivsurvivor/

I had stage 3 pancreatic cancer with a 4mm tumor originally wrapped around my portal vein. My oncologist, Dr. Margaret Tempero of UCSF started the pancreatic cancer treatment program at UCSF. She recommended my surgical oncologist to me. Four months ago, Dr. Carlos Corvera performed the Whipple on me. He usually does two Whipples a day, but mine required the entire day and he pulled in a transplant specialist to assist. Dr. Corvera imdoes surgery at UCSF Parnassus campus. The nurses who cared for me afterwards were phenomenal. I had a complicated recovery and was in hospital for 17 days. Not the typical recovery window I’m told.

Thank you for the advice to tell my team about my cheeks- plus neuropathy. The numbness in my face does give me an uneasy feeling, worry that it will get worse and I can’t stop it. If it was in my tongue and affecting my speaking, I would probably panic! Thank you for this good advice.

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.

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.