Pancreatic Cancer Group: Introduce yourself and connect with others

@mayojoe7, will your first consult be by phone or in person? If in person, @marvinjsturing can help you know what you can expect about Mayo Clinic Rochester with COVID-19 protocols in place. He was just there, or even still, is for radiation treatments. Unfortunately, I just found out the Cancer Education Center in the Gonda building is closed. It's a great place to get information and to relax between appointments.

Joe: Do you have a list of questions ready for Dr. Mahipal? Anything you'd like to ask Connect members as you prepare for your appointment?

My husband and I were at Mayo Rochester today for final tests in anticipation of his Whipple procedure with Dr. Truty tomorrow. It was like a ghost town but we felt very safe from the virus with the screening checkpoints they had at every entrance, and most people we did see were wearing masks. It was amazing getting a parking spot up close - very few cars in the ramp and few people in the waiting rooms. We are very thankful to be able to continue my husband's course of treatment given all the surgeries that were cancelled lately. We are looking forward to him being cured after a very long year of chemo and radiation!

Best of luck tomorrow!!!

Thanks for stepping in and painting a picture for @mayojoe7 of what Mayo Clinic is like these days.

Sleep well, @fassbinder and all the best for tomorrow. I look forward to hearing from you, while you wait and need to talk or when you have news.

Hello-we will be meeting with Dr. Mahipal in person tomorrow. My wife and I are very glad to get the process moving. I have several questions prepared-mostly about the plan, chemo timing & frequency, what to expect, etc. We live in the Twin Cities so I could potentially have chemo treatment at Mayo-that is currently the plan. I believe I will most likely have Fofirinox or a combination of Gemcitabine/Abraxane. When I had hodgkins chemo, I had a groshong catheter placed which made chemo intake less painful. May not be necessary for this chemo treatment. So, I have questions like that. I will also be asking about other treatment option down the road, i.e. radiation, whipple procedure, immunotherapy considerations, clinical trial options, etc. Lots to talk about but we are very glad to be getting started. If there is anything that jumps out to folks we should ask I would certainly welcome the advice. Joe

Hello, I just received an email from PanCan that mentioned there are some webinars setup for "Navigating Pancreatic Cancer Care During the Coronavirus Crisis" Not sure if I am supposed to do this, but thought others may benefit.

Tuesday, April 14, 2020 • 2 – 3 p.m. PDT

Please note time zone differences:
3 – 4 p.m. MDT
4 – 5 p.m. CDT
5 – 6 p.m. EDT

After registering, you will receive a confirmation email containing a link to join the webinar. The email will also include instructions for the audio portion of the webinar:
https://www.pancan.org/facing-pancreatic-cancer/patient-services/educational-events/

How are you doing?

@drewgrebe I had radiation treatment 21 this morning. Four more to go. Mostly I am feeling good. A touch of nausea right after my treatment but it passes quickly. There must be a little bit of radiation burn to my lower esophagus because sometimes there is slight pain when I swallow food. The biggest issue is fatigue. But I can take naps whenever I want because I am not going anywhere except to my daily radiation treatments. I meet with my radiologist every Tuesday. This week I was told that they consider this to be palliative care. I have been contacted by Mayo about a clinical trial that is currently going on that I can apply to participate in. I need to find out more about before I sign up. Taking everything into consideration, I'm getting along pretty good!

@marvinjsturing, so good to hear from you. Like @drewgrebe I was thinking about you today. You mention that the goal of this radiation is palliative rather than curative. Have you been in touch with a palliative care team at Mayo Rochester? That may be something you want to look into while you're there and to have set up for when you return home
- Mayo's Palliative Care Specialty Group https://www.mayoclinic.org/departments-centers/general-internal-medicine/palliative-care-minnesota/overview

@kjrita, of course you can post the link to PanCan's educational webinars. I fixed the URL so that it goes to the page on their website. I think the link you provided was from an email you received, which didn't work for others.

@drewgrebe How is your fiancée doing? How many more chemo treatments left to go?

Hello @treadmillann My wife has also had terrible reaction to the Creon, severe stomach pain and diarrhea. To make matters worse, the recommendation from the surgical staff was always the same, increase the Creon dosage. She lost over 20% of her body weight before we just decided to stop the Creon. She has improved marginally by using Imodium with the docs approval but still has intermittent diarrhea. At least the weight loss seems to have bottomed out for now. OTC papaya enzymes is the first possible alternative I've heard and will try them. How did you learn about digestive enzymes building food? I need to do more research.

How are you doing now? What is working for you?

PS my wife thinks that she can't take the Creon because it is a porcine derivative and she might be allergic since she's never eaten pork products.