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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?
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Hello @ russelltturner,
I see this is your first post on Connect, welcome! You mentioned that your doctor is thinking about using Oloparib. I found some information on the NIH website that may be helpful to you. Here is the link, https://www.cancer.gov/publications/dictionaries/cancer-terms/def/olaparib.
How are you feeling? What type of symptoms do you have now?
Just had a Whipple procedure that was aborted 3 weeks ago, had been treated with chemo and radiation tumor had shrunk Doctors felt was respectable but was still too attached to a blood vessel. Ever heard of that situation before, trying to decide on plan B Oloparib was mentioned or surveillance with a scan every 3 mos.
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1 ReactionI'm so glad to hear your good report, @marvinjsturing, and I so appreciate the attitude you bring to us all!
About 2 years ago, I had my 5-year and "final" scan at Rochester. The following December, we moved and I had to find a new oncologist. He ordered a scan that indicated that my cancer was back. Now I am going to Mayo every 3 months for scans. As of January of this year, the cancer is not growing or spreading. I have another scan scheduled for next week Thursday. As long as the cancer is not growing, there will be no treatment because doctors are afraid that chemo will cause further damage to my kidneys. I am taking life one day at a time and am enjoying the coming of spring. It will soon be 7 years since my diagnosis of pancreatic cancer and my Whipple procedure. I thank God for every day of life.
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3 ReactionsHi @marvinjsturing, I was thinking about you today. How are you doing?
Hi Colleen,
Thank you for the information. There are also YouTube videos showing exactly how it’s done. My husband has stage IV pancreatic cancer, but is otherwise healthy and only 54. I feel it’s an option. He’s completed three cycles of chemo, his CA-19 Dropped from 22,000 to 10,000, but he hasn’t had another CT scan done to fully evaluate his response to Folfirinox. I was just wondering if others had the procedure done. From what I understand, there are about 50 hospitals in the United States currently doing it.
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1 ReactionHonestly, 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?
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2 ReactionsHi Colleen, I’m wondering if you know much about the nanoknife IRE procedure for treating pancreas and liver tumors.
Thanks so much!
Hi @skkirby, I thought I'd stop by and check in with you. How are you doing?
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1 Reaction@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?