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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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HugInterested in more discussions like this? Go to the Pancreatic Cancer Support Group.
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@jeannine17 Hi and welcome to Mayo Connect. Hearing the diagnosis can be overwhelming. How are you managing overall? Do you have any additional testing to do? When will you discuss your next steps with your care team? It is great to hear about your 3 month old grandson. How precious. You probably have the biggest smile just being around him?
@tra418
Hi, my wife is scheduled on 4/29 for a Whipple Robotics Surgery. She is obviously concerned. We will me going in to discuss this procedure. As a supportive husband, I don’t know what to expect. Do you have any tips?
@colleenyoung Hi Colleen and all -- thanks for checking in. Yes, I've finished 2 rounds of the three continuous days of mFOLFIRINOX (with pump at home) and it's been more brutal than I had imagined. I was prepared for a lot of fatigue and GI-tract issues, 'soup to poop' but hadn't imagined being sent to the ER after round 1 for critical fecal impaction, or that in round 2, sipping water would feel like knives in my throat, or peripheral neuropathy in my fingers and feet quite yet. It's been hard not to have energy even to sit up for my niece's birthday (small, quiet get-together), or to talk with friends on the phone.
I know it's a marathon, and there will be peaks and valleys and better days than others. My biggest frustration is trying to get info at all. (Such as, when they take 4 vials of blood pre-infusion, does that include CA19-9 test, to see if my markers are changing? The nurses defer to the oncologist, who is incredibly busy.) I'd like to meet with a palliative care physician, for example, but it's tough to know how to find someone when the chemo-care staff are so overworked. Do you request that through primary care? It's a challenge having moved 3,000 miles just weeks before my diagnosis, and leaving my longtime care-providers.
Sorry to go on so long, and thanks for any thoughts,
Mary D