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Moderator

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.

marienewland | @mnewland99 | 6 hours ago
In reply to @robert1978 "Hi, I was diagnosed with Pancreatic Cancer in October 2024. I went to my Dr, (at..." + (show)
@robert1978

Hi,

I was diagnosed with Pancreatic Cancer in October 2024. I went to my Dr, (at my wife's urging) as I just wasn't feeling quite right. Only symptoms were losing a little weight, feeling full when I ate about 1/2 of what I normally would eat and a sore right back. After some blood tests, a CT was recommended. Had to fight to get the CT scan quickly as they were going to get me scheduled in two months. Results came back with a mass on pancreas head. Biopsy the following week confirmed the cancer. Underwent 3 months of chemo beginning the first week of November, 2024 (fought to get in quickly) at Delnor Cancer Center in Geneva, IL, then Whipple surgery in early March, 2025. I highly recommend going to a surgeon who performs a lot of Whipple surgeries. My surgeon was fantastic! He was affiliated with Northwest Hospital in Arlington Heights, IL. I was in the hospital only 4 days and was diagnosed at Stage 2. I am currently in the middle of my nine post operative chemo. rounds. I have treatment once per week for 3 weeks then I have a week off. My best advice is be your own advocate and move as quickly as you can to receive treatment as soon as possible.

Jump to this post

Wonderful news! What chemo treatment are you and do you know your mutations? This is all to help others, thank you.

REPLY
1 reply
robert1978 | @robert1978 | 3 hours ago
In reply to @mnewland99 "Wonderful news! What chemo treatment are you and do you know your mutations? This is all..." + (show)
@mnewland99

Wonderful news! What chemo treatment are you and do you know your mutations? This is all to help others, thank you.

Jump to this post

I am currently on Abraxane and Gemcitabine. My rounds before surgery were Oxiplatin, 5-FU (fluorouracil) and leucovorin. I went through genetic testing and did not have the BRCA gene. The current chemo has fewer side effects for me and I'm able to maintain my weight. The worst side effect is the neuropathy. I lost 40 pounds on the first round of chemotherapy.

REPLY
1 reply
56pan | @56pan | 54 minutes ago
In reply to @robert1978 "I am currently on Abraxane and Gemcitabine. My rounds before surgery were Oxiplatin, 5-FU (fluorouracil) and..." + (show)
@robert1978

I am currently on Abraxane and Gemcitabine. My rounds before surgery were Oxiplatin, 5-FU (fluorouracil) and leucovorin. I went through genetic testing and did not have the BRCA gene. The current chemo has fewer side effects for me and I'm able to maintain my weight. The worst side effect is the neuropathy. I lost 40 pounds on the first round of chemotherapy.

Jump to this post

You might want to check if your chemo infusion center offers cold therapy during chemo. If not, you can buy the cold booties and mittens. I had 12 cycles of Folfirinox and am now on Gemcitibine/Abraxane. My neuropathy in my legs/feet is very bad and I wish I'd known about cold therapy. If anyone has had any luck at all with any treatment for this neuropathy, I'd very much appreciate hearing of it.

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twdevoe | @twdevoe | 38 minutes ago
In reply to @robert1978 "Hi, I was diagnosed with Pancreatic Cancer in October 2024. I went to my Dr, (at..." + (show)
@robert1978

Hi,

I was diagnosed with Pancreatic Cancer in October 2024. I went to my Dr, (at my wife's urging) as I just wasn't feeling quite right. Only symptoms were losing a little weight, feeling full when I ate about 1/2 of what I normally would eat and a sore right back. After some blood tests, a CT was recommended. Had to fight to get the CT scan quickly as they were going to get me scheduled in two months. Results came back with a mass on pancreas head. Biopsy the following week confirmed the cancer. Underwent 3 months of chemo beginning the first week of November, 2024 (fought to get in quickly) at Delnor Cancer Center in Geneva, IL, then Whipple surgery in early March, 2025. I highly recommend going to a surgeon who performs a lot of Whipple surgeries. My surgeon was fantastic! He was affiliated with Northwest Hospital in Arlington Heights, IL. I was in the hospital only 4 days and was diagnosed at Stage 2. I am currently in the middle of my nine post operative chemo. rounds. I have treatment once per week for 3 weeks then I have a week off. My best advice is be your own advocate and move as quickly as you can to receive treatment as soon as possible.

Jump to this post

You and I have a very similar journey, Robert. My Whipple surgery was Aug 2024, and I was Stage 1 until surgery, where six lymph nodes contained the cancer; I'm now Stage three.

I can't agree more that you are your advocate. If I'd stayed with my original surgeon, I'd be gone now, as his view of vascular involvement was to close the abdomen and move to palliative care. I found a better surgeon, and I'm now in remission. I also suggest that strength in heart, mind, and body is crucial for embarking on the journey.

Stay well, my new friend.
Todd

REPLY
twdevoe | @twdevoe | 27 minutes ago

Hi, I'm Todd.
I was diagnosed with pancreatic cancer on May 14, 2024. My Whipple surgery was on 28 August, and I completed my chemo in February of 2025. Today, I'm 80 pounds lighter, and I feel great in remission.

I was fortunate to find the remarkable Dr. Marco Del Chiaro at the University of Colorado (UCHealth) Pancreatic Center of Excellence. If I had not sought out the best options myself, I most likely would not be here to engage with you. You must be your advocate.

If you're feeling apprehensive about your treatment or need someone to talk to who has been through the same journey, reach out.

Best of luck!
Todd

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