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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.

Profile picture for cstroop1
cstroop1 | @cstroop1 | Mar 4 11:34am
In reply to @joeseah "Hi I was diagnosed with having IPMN following food poisoning while on holiday. Had pain above..." + (show)
Profile picture for joeseah @joeseah

Hi
I was diagnosed with having IPMN following food poisoning while on holiday. Had pain above my stomach and went to see my GP. Had US, CT Scan and MRI and it shown IPMN and dilated Main pancreatic duct. I have no symptoms now beside a bit of discomfort now and then. The surgeon recommended surgery, Total Pancreatectomy. I am undecided. Would like to know anyone who had Total Pancreatectomy how the are copping.

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@joeseah

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beckykuh | @beckykuh | Mar 4 10:21am
In reply to @beckykuh "@icelander19 Awe, thanks so much. Appreciate all your tips and ideas and will adjust to routine..." + (show)
Profile picture for beckykuh @beckykuh

@icelander19 Awe, thanks so much. Appreciate all your tips and ideas and will adjust to routine as time goes by. Will just live in the present and take one day at a time for now. Prayers that you continue to do well and thanks again for your help.

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@beckykuh my biggest concern right now is eating. I had Whipple about 5 weeks ago and did one chemo session this week. I am having a really hard time eating food. No appetite and have to make myself eat. Nothing tastes good. I am wondering how long that takes to turn around so can stop loosing weight and not despise food tastes.

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gamaryanne | @gamaryanne | Mar 4 6:56am
In reply to @joeseah "Hi I was diagnosed with having IPMN following food poisoning while on holiday. Had pain above..." + (show)
Profile picture for joeseah @joeseah

Hi
I was diagnosed with having IPMN following food poisoning while on holiday. Had pain above my stomach and went to see my GP. Had US, CT Scan and MRI and it shown IPMN and dilated Main pancreatic duct. I have no symptoms now beside a bit of discomfort now and then. The surgeon recommended surgery, Total Pancreatectomy. I am undecided. Would like to know anyone who had Total Pancreatectomy how the are copping.

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@joeseah
I would certainly get a second opinion. Surgery for IPMN appears radical.

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1 reply
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marienewland | @mnewland99 | Mar 4 1:37am
In reply to @castell "@icelander19 I had Whipple almost ten years ago. Surgical pathology report showed two positive lymph nodes,..." + (show)
Profile picture for castell @castell

@icelander19
I had Whipple almost ten years ago. Surgical pathology report showed two positive lymph nodes, one at the hepatic artery (usually a bad indicator).

No complications. No recurrence. Six months of chemo after Whipple. Use Creon with every meal. Everything worked out surprisingly well, despite a grim outlook at times.

Best of luck -- we all need it.

CG

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@castell
You are incredibly lucky! Thank you for posting as more people need to be aware that positive results are possible, however, I think it would be important for others to know your mutations and whether they were germline or somatic, and how much of your pancreas was removed. Everyone is different, but the scientist in me would like connect the common denominators for your success of 10 years especially since you had metastasis to 2 lymph nodes. Please share which chemo drugs you were on. I had the distal pamcretectomy with 75% of pancreas removed and total spleen removal. Metastasis to 1 lymph node. I also had chemo (folfirnox) for 6 months. Biopsy of pancreatic tissue revealed KRAS12D, TP53, and ATM base substitution of unknown significance. I believe there was possibly hepatic artery involvement though that soft tissue area wasn't identified until 2 months after my surgery (it's stable now). My latest Guardant 360 or liquid biopsy shows only TP53 and SMAD-4 mutations; no more KRAS or ATM, surprisingly. My surgery was in tne last quarter of 2022, and I've been fighting its metastasis with every modality that I can think of. I feel ok, but it's spreading in the peritoneum and possibly liver again. My next step is try a drug that might be able to fight the CLD18.2 protein I have that's often associated with the potential for stomach cancer which may come from the peritoneal carcinomatosis. I'll post if I'm accepted into the trial for CLD18.2. I wish you continued success and hope that your response may help others.

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2 replies
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castell | @castell | Mar 3 10:45pm
In reply to @icelander19 "If there is anyone on here who had whipple surgery a few years back, can you..." + (show)
Profile picture for icelander19 @icelander19

If there is anyone on here who had whipple surgery a few years back, can you tell me how you are doing now.

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@icelander19
I had Whipple almost ten years ago. Surgical pathology report showed two positive lymph nodes, one at the hepatic artery (usually a bad indicator).

No complications. No recurrence. Six months of chemo after Whipple. Use Creon with every meal. Everything worked out surprisingly well, despite a grim outlook at times.

Best of luck -- we all need it.

CG

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2 replies
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yellie | @yellie | Mar 3 7:09pm
In reply to @gamaryanne "@yellie I wish!" + (show)
Profile picture for gamaryanne @gamaryanne

@yellie I wish!

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@gamaryanne agreed! Wish that there were better standards of care.

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beckykuh | @beckykuh | Mar 3 1:17pm
In reply to @icelander19 "I don't recall how long it took. I remember my surgeon told me to eat often..." + (show)
Profile picture for icelander19 @icelander19

I don't recall how long it took. I remember my surgeon told me to eat often and small meals. That way there was less problem with digestion. I still have a lot of digestion problems, probably because of how extensive the whipple surgery is. These days I eat whatever I want but sometimes pay for it after. My bean bag in the microwave sure helps. The chemo can be very hard on you later. Just take it one treatment at a time. I know how overwhelming it can be. I recall sitting in the chair at cancer care, at my first chemo treatment, and I was just overwhelmed and couldn't stop crying. It is natural. I hope you have a good support system at home. I sure wish you all the best and send hugs.

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@icelander19 Awe, thanks so much. Appreciate all your tips and ideas and will adjust to routine as time goes by. Will just live in the present and take one day at a time for now. Prayers that you continue to do well and thanks again for your help.

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1 reply
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icelander19 | @icelander19 | Mar 3 12:23pm

I don't recall how long it took. I remember my surgeon told me to eat often and small meals. That way there was less problem with digestion. I still have a lot of digestion problems, probably because of how extensive the whipple surgery is. These days I eat whatever I want but sometimes pay for it after. My bean bag in the microwave sure helps. The chemo can be very hard on you later. Just take it one treatment at a time. I know how overwhelming it can be. I recall sitting in the chair at cancer care, at my first chemo treatment, and I was just overwhelmed and couldn't stop crying. It is natural. I hope you have a good support system at home. I sure wish you all the best and send hugs.

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1 reply
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icelander19 | @icelander19 | Mar 3 12:15pm
In reply to @beckykuh "@icelander19 Thank you so much for your reply. It is a bit overwhelming to me right..." + (show)
Profile picture for beckykuh @beckykuh

@icelander19 Thank you so much for your reply. It is a bit overwhelming to me right now and am learning as i go. Had my first chemo treatment on Friday. Always nice to talk with others to see how they dealt with side effects. How long did it take you to get an appetite back? Am making lots of notes, so on next treatment will know more of what to expect. Thanks for your input, sure appreciate it.

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@beckykuh

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joeseah | @joeseah | Mar 3 11:29am
In reply to @joealp1 "@lhlawrence I'm an 87 year old man, diagnosed in Feb. 2025 with adenocarcinoma in head of..." + (show)
Profile picture for joealp1 @joealp1

@lhlawrence
I'm an 87 year old man, diagnosed in Feb. 2025 with adenocarcinoma in head of pancreas, non-resectable. I've been on chemo, gemcitabine and abraxane, since March, every 2 weeks, so far no metastasis. My surgical guy, Mark Bloomston, with Lee Health in southwest Florida, introduced me to two potential procedures for shrinkage of the tumor: nanoknife and histotripsy. The latter is non invasive, using high energy ultra sound to generate gas bubbles in the tumor that burst, destroying the tumor in the process. It's new for the pancreas, has been approved for use in the liver by the FCC. I had the histotripsy procedure done in December, as an outpatient, recovery a piece of cake, and significant impact on the tumor. Final results await the next scan, but Bloomston very pleased. Your doctors should be aware of these options, nanoknife has been around for a while. Histotripsy for the pancreas is new and wasn't covered by my insurance. Could be a problem. I've learned a lot from ChatGPT, recommend it as a surrogate doctor for general advice and options for discussion with the real gdoctors. Hope this helps.

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@joealp1
Thanks for sharing. Will be interested to see you you get on at your next scan.

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