Pancreatic Cancer Group: Introduce yourself and connect with others

Wow! May I suggest buying Lotto tickets, lol.

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.

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.

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.

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.

@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?

If I may ask - Who was your surgeon at Mayo and what stage were you? What is your status now?

Hello everyone, and thank you for allowing me to join this discussion. My journey with pancreatic cancer began in August 2023 when I received my diagnosis. Since then, I've been through 12 rounds of chemotherapy, specifically following the FOLFIRINOX (FFX) regimen. I later underwent 15 rounds of radiation using the Proton Beam at Mayo Clinic. The cancer responded to the treatment very well. In June 2024, I had a total pancreatectomy at Mayo Clinic Rochester, where I was hospitalized for about a month. I’m incredibly grateful for the exceptional care I’ve received from my team, led by Dr. Truty.

Currently, I'm still in recovery, which I understand can take a year or longer. I have good days and bad days but most days I don't feel all that well. I recently had my first 3-month check-up, and thankfully, the cancer hasn’t metastasized. While I'm still reliant on a feeding tube about 12 hours a day for most of my nutrition, as eating orally remains challenging, I can only eat about 1 - 2 small meals a day. It's also been difficult to get my blood sugars manageable with insulin due to the feeding tube.

I'm exploring ways to manage nutrition and comfort. I’ve been learning more about Creon dosages to help with digestion, and I'm also addressing neuropathy in my hands and feet with acupuncture and topical creams. Medical cannabis is another area I’m experimenting with, in tablet and gummy forms, to help with various symptoms. Additionally, I've started working with a psychiatrist to develop coping skills for this new chapter of my life.

I would also add that I have an incredible support system with my wife, children, and friends.

I look forward to learning from everyone here and I'd be glad to share insights from my own experiences.

I forgot to paste the links to the NCI Centers of Excellence and the National Pancreas Foundation recommended Comprehensive Cancer Centers. Here they are:

CENTERS OF EXCELLENCE
https://www.cancer.gov/research/infrastructure/cancer-centers/find
https://pancreasfoundation.org/patient-resources/npf-centers-of-excellence/

I concur that, with this cancer in particular, your best bet is to find a Center of Excellence if at all possible. I realize there may be barriers—time, travel, financial, etc.—but there are very good reasons to do it if you can. I don’t know where you live, but Mayo might actually be closer to you. And if you can get to Mpls there are regular shuttles to Mayo.

I get my care at MN Oncology (MO) in Mpls which is affiliated with Mayo Clinic in Rochester. Mayo is a Center of Excellence. My oncologist at MO works closely with the teams—and had trained—at Mayo. I like the arrangement. It’s like having on-going second opinions. So far, they’ve always been on the same page.

I was diagnosed in March 2023. That year I had 12 rounds of chemo (6 months) and a Whipple procedure. I was seen by my MO oncologist regularly (every two weeks) and had the treatments in Minneapolis. After my initial consultation with him we decided to make the referral to Mayo for the surgery. I wanted someone who does this surgery weekly rather than just a few times a year. So, I had the Whipple done at Mayo and saw a member of their oncology team whenever I was there for testing, consultation and/or surgery follow-up.

Since the beginning of this year I have had testing and seen an oncologist at Mayo every 3 months and see my oncologist at MO every three months.

Your treatment plan will probably be different than mine, but I wanted to give you a sense of what might be in the cards going forward and give you something to chew on. But I know you’ve got a lot to chew on already. Having a cancer diagnosis is a challenging situation.

I wish you all the best.