Pancreatic Cancer Group: Introduce yourself and connect with others

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.

@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

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?

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.

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.

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

@skkirby Hello Sherry and welcome to Mayo Clinic Connect,

It is just fine that you posted here in this group, however, I would like to invite you to a group discussion specifically for those of us with neuroendocrine tumors (NET). We do have some members with pNET and they have a discussion as well.

Congratulations on your surgery at Mayo Clinic on January 4. That has been less than a month and you should expect some soreness yet. When I had my first surgery for NETs (of the duodenal bulb) I was the same age as you are now. You should expect not to feel quite yourself for a few months. i found that it took me about six months before I was back to my normal energy level. I had an office job, though, and was not involved in physical exertion in the way you have been in your career.

You are right that pancreatic cancer is silent and so are NETs. So you have silence in both arenas. I have had three surgeries all total and so you are right that there will be periodic follow-ups to check for cancer recurrence. I would recommend that you sign up for monthly emails from the Carcinoid Cancer Foundation. Here is a link to their website, https://www.carcinoid.org/. When you go to the website you will be invited to join the email list.

Here is a link to the Mayo Connect discussion group on NETs, https://connect.mayoclinic.org/group/neuroendocrine-tumors-nets/.
I would like to introduce you to @ronregency, who also has pancreatic NETs. I hope that she will post with you. Here is the link to her profile, https://connect.mayoclinic.org/member/180734aa00348c848446bce5bdbae32978841ebc8b/. You can read about her history with pNETs.

Mayo Clinic also has a NETs support group for patients. The group will be meeting this Thursday, Feb. 4 from Florida. It is a Zoom meeting so if you are available at 5:30 to 7 p.m. EST, or any part of that time, please join us. This group meets monthly so if you can't attend this month, perhaps at another time. Here is the information:
Join the NE FL Neuroendocrine Cancer Zebras for our monthly meeting.
Support Group Meeting
Thursday, February 4, 2021; 5:30 to 7 p.m.

Topic: Sharing Resources and Support

Michelle Walsh, LCSW, Oncology Social Work
Location: Virtual (Zoom)
You are invited to a Zoom meeting.

Please register in advance for this meeting since space is limited to 50 participants:
https://mchealth.zoom.us/meeting/register/vpUqdeGvrzksvBPx9kW8518Rtp8_vzMoEg
After registering, you will receive a confirmation email containing information about joining the meeting.

For questions or concerns, please call 904-953-6831

I look forward to getting to know you in future posts or in the support group. Will you post again after your next appointment?

Hi @skkirby, I thought I'd stop by and check in with you. How are you doing?

Hi Colleen, I’m wondering if you know much about the nanoknife IRE procedure for treating pancreas and liver tumors.
Thanks so much!

Honestly, I don't know much about irreversible electroporation (IRE), but I found this information
- What is IRE (Nanoknife)? https://www.pancreaticcancer.org.uk/information/treatments-for-pancreatic-cancer/irreversible-electroporation-nanoknife-for-pancreatic-cancer/what-is-ire-nanoknife-for-pancreatic-cancer/
- NanoKnife Offers Promising Treatment Option for Locally Unresectable Pancreas Tumors https://www.roswellpark.org/article/nanoknife-offers-promising-treatment-option-locally-unresectable-pancreas-tumors

@allboyzoo, is IRE a treatment option available to you?