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.

happyjack | @happyjack | 6 days ago

In reply to @hakanb "I live in Turkey. I know that cancer rates in the US are higher than in..." + (show)

I think some of this is that healthcare is better in some countries than others. I have read reports about national healthcare in Canada being so slow that people that can afford it had been going to the us for services. MRI's, CT's and other things like knee replacement and even x=rays. Things have slowed down some in the US with the expansion of healthcare over the last 10 or so years. But if a country has poor health care then cancer will not be found so there will be fewer cases diagnosed. And if a country has really good health care then more cases will be diagnosed. Maybe this will not account for all the difference but it would a bit I think.

hakanb | @hakanb | 6 days ago

I think the fact that there are so many cancer patients in developed countries is explained by living conditions, non-ecological living, stress, etc. The treatment of cancer patients is completely free of charge in Turkey, including everything.

mikelab | @mikelab | 6 days ago

Thanks for the info and advice. I have resumed some of my usual chores, especially with our livestock and look forward to more contact with them when allowed post surgery. Your input is valued and appreciated. Best wishes to you and your husband for the new year.

joiedevivre | @joiedevivre | 6 days ago

In reply to @mikelab "Thanks for the info and advice. I have resumed some of my usual chores, especially with..." + (show)

If your spleen is to be removed, talk to surgeon about vaccinations needed prior to or soon after surgery. Immunity will be low so not too much interaction with anything that can pass you bugs. Eat carefully - fresh food; no leftovers for a while, no raw food, no salads in restaurants. All the best.

hakanb | @hakanb | 3 days ago

Hello again, they recommended beano next to creon. Has anyone used it? The problem is that it is not available in Turkey, it is not possible to order it from America

happyjack | @happyjack | 2 days ago

In reply to @hakanb "Hello again, they recommended beano next to creon. Has anyone used it? The problem is that..." + (show)

Not sure who the they is you are talking about. There is prescription medication to treat gas and the bloating and pain it causes. I had a small intestine resection back in 81 and have had trouble constipation since. December 2023 I had major symptoms with diarrhea and one of the medications I was put on is Dicyclomine. It treats IBS giving relief of bloating and gas pain. It helped a bit but until I stopped my intake of fat and found that was the cause of my problem and started Creon did I get any significant relief. Up until then the only way I could leave my house was to stop eating for 12 or more hours. That was in the spring of 2024. Then doctors were all sure my pancreas was just not producing enough enzymes and refused to test for cancer. June 1st my tumor was found. I am still taking the Dicyclomine and Creon after Whipple surgery. I adjust my Creon so as not to return me to my pre cancer constipation or my pancan steatorrhea. A search for Creon should bring up an old thread by another member that lists fat levels in your diet with the amount of Creon to take. Ask your doctor about prescription medication for you to control your gas. Best of luck to you and everyone dealing with cancer.

dalegantous | @dalegantous | 2 days ago

Hi all, not sure if anyone has any comments for me , just thought I'd post what I'm currently going through, I find all your comments very helpful:

I was in chemo cycle 2 in early December, and on my 2nd infusion I got a high fever (although no infection, WBC and neutrophils all good) but my ALT liver enzyme skyrocketed to 519. Doctor cancelled my 3rd infusion to give me a break, and lowered my Gemcitabene dosage to 80% for my 3rd cycle to avoid damaging my liver (my ALT had come down on its own, no blockages, but still high at 81). Unfortunately, the break also gave my cancer a break, and my metastasized belly tumors started growing again and became painful. I had my first infusion of cycle 3 on December 27th, enough my CA19-9 had jumped from 78 to 159 to 322 and still lots of tumor pain. So naturally I freaked out. Tried to get them to up my Gemcitabene dosage to 90% for the 2nd infusion, but my Doc was on vacation and the on-call oncologist wouldn't do it. I had my 2nd infusion yesterday, and so far things seem a little better, still a bit of pain but less so far, and my anxiety is lower. I have my CT scan on Tuesday. I'm not expecting great CT scan results but we'll see. Gotta figure out if this cocktail can do it for me.