Pancreatic Cancer Group: Introduce yourself and connect with others

Hello- I am not sure if I fit into this group so please let me know if there if there is another group that would be better for me. My name is Sherry and I was diangosed with a pancreatic neuroendocrine tumor (pNET) in October 2020 and just had a distal pancreatectomy (60% resection) with a splenectomy at Rochester Mayo on Jan. 4, 2021 at the age of 53. I am on the road to recovery and am starting to feel like myself again, but tend to be sore at the end of a long day. My tumor was fairly small 2.2 x 1.4 x 1.6 cm and was located in the head/neck of the pancreas. I have my first follow-up appointment with the surgeon on 2/11/21 and then in the afternoon (2/11/21) meet with our oncologist for the first time. I am a bit excited to know more about my particular cancer as my surgeon (Dr. Sean Cleary) informed us that my particular tumor was rare. I work full-time as a 911 Dispatcher (25 years) and volunteer part-time as a medic for our local community. While I tend to handle stress well given my occupations, I am a bit nervous about the recurrence of cancer to the remaining portion of my pancreas and wonder (and hoping) that Mayo will suggest monitoring it since pancreatic cancer is a silent creature. I would love to hear if anyone has any suggestions or had experienced this type of cancer. Also, I am an avid reader if anyone has any suggestions on books/reading matierals that they would be able to recommend regarding pNET, pancreactic cancer or how to stay sane and not worry. 🙂 Special blessings to all who are suffering/recovering. SK

It's good that your husband is feeling well while getting his infusions. Folfirinox is a tough regimen. I should have also asked if his treatment includes the wear-home 48 hour infusion of 5FU?

My wife was initially diagnosed as borderline resectable but the chemo and sbrt shrank the tumor so much that resection was able to be done. Your question of "where" is possibly the most important in pancan treatment. We are in Orlando FL and we got a local diagnosis but went to Johns Hopkins for second opinion. Her infusions were delivered locally under the direction of JH . Her sbrt and surgery were also at JH.

SF is a major city and your husband should see a surgeon who has performed hundreds of pancan surgeries. It's not a procedure for anyone who's read about the procedure but doesn't have tons of experience. Don't be embarrassed to ask your surgeon how many pancan procedures he and his staff and the hospital have performed and assistance in a second opinion referral. Also the success rates of the surgeries. We also spoke to surgeons at MD Anderson in TX and Moffet in Tampa.

Also contact pancan.org They have a referral service as well as support groups if you need one.

Best wishes.

Hi beachdog, thanks for your thoughts and prayers, they are so appreciated. My husband’s tumor is in the tail and body of his pancreas. It was already 10cm when it was discovered and he had no symptoms other than vague abdominal pain. He also has several smaller lesions on his liver making it stage IV. He had his second round of Folfirinox today and oxalyplaten is included in the cocktail. A liver lesion was biopsied for genetic testing, but we haven’t received the results yet. Most doctors we’ve spoken to say he’s not a candidate for surgery, but I wonder why at Stage 3 your wife was. I hope she’s doing well, that sounds like so much to overcome. We’re in San Francisco, so maybe another region of the country has different ideas. I’m a labor and delivery nurse and everything I know about oncology I’ve learned in the last eight weeks. I’m not sure what I’m looking for on this platform other than hearing how others navigate this difficult course. I have hope for my husband because he’s otherwise healthy. He works as a residential building contractor and we had to stop Home Depot on our way home from the six hour infusion treatment this afternoon. We try to stay positive, we’re surrounded by our kids, a beautiful family and so much to look forward to.

Hi again, @allboyzoo. I see that @beachdog has kindly introduced himself. In this group, you'll also meet fellow pancreatic cancer caregivers like @ginathemom @debsid @julie2018 @susan2018 @colorafo19 and @fassbinder, as well as people living with pancreatic cancer.

While we wait for others to join in, I echo Beachdog's questions. Is surgery an option for your husband's cancer? What questions to you have?

@allboyzoo Best wishes and prayers for you and your husband. My wife was diagnosed at stage 3 in July 2019 and had 9 folfirinox treatments before sbrt and then an Appleby surgery as well as spleen, Gaul bladder, adrenal and lymph nodes removals. Her tumor was mid-pancreas. Most diagnoses you'll read about are in the head of the pancreas and receive Whipple procedures. Do his folfirinox treatments include oxalyplaten? Has his tumor been genetically analyzed? There is a particular PALB2 mutation which makes the tumor susceptible to the oxalyplaten. Hopefully his C19-9 starts dropping with the folfirinox treatments. Good luck

Welcome @allboyzoo. I have to dash off to a doctor's appointment with my mom, but just saw your message and wanted to welcome you. I will write more when I'm back and introduce to others.

Hi,
My husband was diagnosed with stage IV pancreatic cancer two months ago. Like so many others, he was just living a normal life when his doctor ordered a CT scan. His stomach was bothering him and all lab results were normal. We never suspected anything like this. He wasn’t even sick. He has a 10cm tumor in the body and tail of his pancreas with several smaller lesions in his liver. He started his first cycle of Folfirinox 13 days ago and round two is tomorrow morning. I feel hopeful most of the time, and terrified some of the time. I’m hoping to hear from more caregivers about how they’re coping. I’ve been a registered nurse for many years, but always in labor and delivery. Everything I know about oncology I’ve learned in the past few weeks.

Yes, for now.

Those are all important considerations, @mscarano. Will you keep posting as you find answers?

Agree, need to include Palliative Care and also alternative options. Need to start working it, but don't know what I'm up against and how best to determine what doctors/teams are best to work with in my area. Need to also include Cigna insurance to figure out what they cover in-house.