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Pancreatic Cancer Group: Introduce yourself and connect with others

Posted by Colleen Young, Connect Director @colleenyoung, Dec 3, 2019

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?

Interested in more discussions like this? Go to the Pancreatic Cancer Support Group.

rjm1942 | @rjm1942 | 4 hours ago
In reply to @mnewland99 "Hello rjm1942! I believe I read that proton therapy is good for tumors rather than lesions...." + (show)
@mnewland99

Hello rjm1942!
I believe I read that proton therapy is good for tumors rather than lesions.
What is the size of tumor your husband is dealing with?
I was able to get surgery for the tumor in the tail of my pancreas, but after my surgery and without chemo for 4 months it metastasized to the liver. I got GAC (now just GA) chemo and still am for 11 months now, which shrunk my liver lesion from 1.5cm to 0.9 cm. Another 1cm liver lesion is no longer seen on my scans and my tumor marker is in the normal range. I got the MRIdean radiation at City of Hope in Irvine with an expert in that field in order to hopefully kill that lesion which remained at 0.9cm. In early December I’ll find out if it worked (my radiation treatments (3) ended in mid-October). The radiologist recommended that I continue on chemotherapy during the course of my 3 treatments which were administered over a 2 week period. I had slight nausea and weakness during that time, but I don’t know if was from the chemo or radiation; either way the effects were very slight and I’m hoping well worth the effort. Some of your decision might be based on the size of your tumor.

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Tumor size is 3.3 cm. Had shrunk from chemo (Gem&Abax) about 25% at first but second CT scan it remained the same. Radiation is recommended next. In researching radiation have been reading lots of good things about Proton radiation which is supposed to be less harsh on surrounding organs, however, because its isn’t widely available info on people who have had it is hard to find. Thank you for sharing your experiences. Arlene

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joiedevivre | @joiedevivre | 3 minutes ago
In reply to @gamaryanne "Hello mchris327, Am sure you are in shock. It’s a difficult diagnosis to accept, esp. if..." + (show)
@gamaryanne

Hello mchris327,
Am sure you are in shock. It’s a difficult diagnosis to accept, esp. if your symptoms have been minimal.
I was diagnosed almost 3 years ago stage IV and I’m still here! Be encouraged!!

But-no matter how much you “like” your doctor you must have second opinions. From a pancreas center of excellence. Find pancan.org and call them. They can direct you to the closest location.

There are great things finally happening with this disease. But you must get to the right people! Pray that God leads you to them. He will!

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@gamaryanne May I ask what chemo regime you are on? I assume you are still on a regime.

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