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.

Colleen Young, Connect Director | @colleenyoung | Nov 5 8:23pm

In reply to @mchris327 "Don’t know what a Pancreatic Center of Excellence would be in my area. As I live..." + (show)

@mchris327, if you would like to seek a second opinion with Mayo Clinic experts, you can submit a request here: http://mayocl.in/1mtmR63

Mayo Clinic, Rochester, Minnesota has some of the top pancreatic cancer experts in the world. Read more here: https://www.mayoclinic.org/diseases-conditions/pancreatic-cancer/care-at-mayo-clinic/mac-20355431

Sometimes patients choose to be evaluated (staged) at Mayo Clinic and get specialized care like surgery or radiation, but have chemotherapy as recommended by the Mayo evaluation closer to home. Might that be an option for you?

You say that you live 3 hours away from Minneapolis. Might you live near a Mayo Clinic Health System location?

jeeplewis | @jeeplewis | Nov 5 9:43pm

In reply to @cre8tive "If I may ask - Who was your surgeon at Mayo and what stage were you?..." + (show)

My surgeon was Cornelius Thiels. I was diagnosed at stage 1A and am now 11 months out from my last chemo. At 8 months out there was no evidence of disease and only red blood cells have not recovered fully from the treatment.

ronninemire | @ronninemire | Nov 9 9:08am

My name is Ron Ninemire. I was diagnosed with pancreatic cancer in April 2022. I had the Whipple surgery. Also, I have had full fear knocks, chemo, and radiation. The tumor in my pancreas was removed, but they were unable to get clean margins. It has reoccurred in August 2023 and that is when I underwent Chemo and radiation. Since that time the tumor has shrunk a small amount and my CA 19 has been in the normal level. There have been no metastasis to this tumor as yet. Currently, I am feeling great and exercising. Also, I am getting used to being a type one diabetic since They removed most of my pancreas and killed the rest with the radiation. However, I am happy and alive.

marienewland | @mnewland99 | Nov 10 8:44am

ronninemire - creative way of designating FOLFIRINOX as full fear knocks” ha ha. My favorite of course is just FU. However, very much agree, “happy to be alive”!
So you aren’t on any chemo right now and your tumor marker is normal? That’s fantastic! Were you stage 1 or 2 at the time of surgery? Also, do you mind sharing what your mutations? Mine were/are ATM, KRAS12D, and TP53, and TSC2.

ronninemire | @ronninemire | Nov 10 11:17am

In reply to @mnewland99 "ronninemire - creative way of designating FOLFIRINOX as full fear knocks” ha ha. My favorite of..." + (show)

Yes, the spellcheck is funny at times and of course I didn’t check that post before I sent it. After I had sent it, I started laughing at myself. When I was initially diagnosed, they did not give me a stage, even though I had asked for that. Throughout my treatment I have not Been aware of any stage or what my mutations may be. I will look into those two items sometime this week. The Mayo Clinic is treating me along with university of Kansas. I am currently not on chemo or radiation. The doctors have all said I was “an anomaly and “exception to the rule“. When I have recently visited them, they all have told me they did not expect me to be Here two years later.

marienewland | @mnewland99 | Nov 10 11:32am

In reply to @ronninemire "Yes, the spellcheck is funny at times and of course I didn’t check that post before..." + (show)

Wow! May I suggest buying Lotto tickets, lol.

mohammed01 | @mohammed01 | Nov 13 8:39pm

Hello, my father had chronic pancreatitis and had to go through the Whipple procedure as it was the only option for him according to every doctor we visited, the operation was nearly three years ago but unfortunately he’s still losing an enormous amount of weight as he lost nearly 120 lb, he is still not able to eat a complete meal without getting diarrhea and stomach pain, he is a walking skeleton and people get terrified of the way his body and face looks, he’s not taking any vitamins or supplements and his diet is so light, any information that helps his case would be much appreciated, thanks.

gamaryanne | @gamaryanne | Nov 14 6:59am

In reply to @mohammed01 "Hello, my father had chronic pancreatitis and had to go through the Whipple procedure as it..." + (show)

Is your father taking Creon with each meal? Does his doctor have a dietician in clinic?
My surgeon does and I find it extremely helpful to work with her. Especially after surgery.
If he cannot afford creon there are alternatives. The key is to learn how to manage it as one eats. This is not normal; a doctor should be addressing this pronto

ronninemire | @ronninemire | Nov 14 7:55am

For the first year and a half I lost a tremendous amount of weight after my Whipple procedure. Food did not taste good and I just couldn’t eat. However, that has resolved. But I lost 40 pounds. I am currently taking Creon which has helped me immensely.

TimK1716 | @tjk | Nov 14 5:32pm

In reply to @mchris327 "Hi allow me to introduce myself mchris327. I’m diagnosed with pancreatic cancer yesterday. So overwhelming! To..." + (show)

Hello mchris327. I am sorry to hear and is understandable to be overwhelmed. I am a 10 year survivor and was fortunate to get good care right away. Sure there are challenges being in a small town so you will need to get some referrals. PanCan ( Pancreatic Cancer Action Network is a wonderful resource so maybe contact them. I am sorry you are dealing with this but there is hope. My best to you in your journey!