Pancreatic Cancer Group: Introduce yourself and connect with others

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.

@mayoconnectuser1

silver182,

Please consider that everyone is different - and, many surgeons believe chemo before and after Whipple is appropriate.

Your binary statement may not be the correct course of action.

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I can only relate my experience’s! The person asked specific questions, I gave answerers related to my experiences! Per my experience every practicing physician has an opinion and per my experience each doctor has a different opinion.

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@wjk

@silver182 Thanks for taking the time to reply and answer some of my questions. Much appreciated.
Glad you've had a good ride since your diagnosis and Whipple. My rodeo is ongoing for now.
Onward.

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Good luck & keep us informed!

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I am Vicki Lynn, my husband was recently diagnosed with pancreatic cancer, March 14th. We're still going through the process of diagnosis and treatment chioces. We have been trying to find answers to his health issues since October 2023. Is this typical or should we go elsewhere for answers? Is it hard to get an appointment at the Mayo Clinic? Would it be a long process as well? Every appointment here seems to be several days appart. It seems like the cancer will become much worse before we find treatment. Could someone please advise me. Thank you

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@vlny2018

I am Vicki Lynn, my husband was recently diagnosed with pancreatic cancer, March 14th. We're still going through the process of diagnosis and treatment chioces. We have been trying to find answers to his health issues since October 2023. Is this typical or should we go elsewhere for answers? Is it hard to get an appointment at the Mayo Clinic? Would it be a long process as well? Every appointment here seems to be several days appart. It seems like the cancer will become much worse before we find treatment. Could someone please advise me. Thank you

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Vicki
May you find lots of good advice here and from other sources as well.
For what it's worth, as one diagnosed with pancreatic cancer (Adenocarcinoma) not quite one year ago, and has been and will be treated at Mayo Rochester, here are a few thoughts and personal opinions.
1. Yes, it typically takes a bit of time to be seen at Mayo Rochester (apparently longer in Mayo Clinics in Florida and Arizona). It took me approximately 3+ weeks to get an initial appointment as a self-referred patient from distant Alaska. Some other renowned cancer centers with expertise in pancreatic cancer say they can see patients somewhat sooner (1.5 - 2 weeks) but I don't really know.
2. If you consider or elect to go somewhere else I urge you only to connect with cancer centers of excellence around the country, e.g., MD Anderson, MSKK, John Hopkins, etc.
3. Of course, the sooner definitive diagnosis and treatment begins, the likelihood of a better outcome.
FYI, there are several folks in this pancreatic cancer group fighting this disease who have an extraordinary amount of awareness of pancreatic cancer and offer informed advice. The moderator for this pancreatic cancer group, Colleen Young, is a very helpful resource as well. And of course PanCAN, the Pancreatic Action Network is a good source of information as well. https://pancan.org/facing-pancreatic-cancer/
I hope this helps a bit.
Best wishes to you and your husband going forward.

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Thank you, this is really great information. As I'm sure you know, right now we're just overwelmed with this diagnosis. My father passed away from it 7 years ago.

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@wjk

Vicki
May you find lots of good advice here and from other sources as well.
For what it's worth, as one diagnosed with pancreatic cancer (Adenocarcinoma) not quite one year ago, and has been and will be treated at Mayo Rochester, here are a few thoughts and personal opinions.
1. Yes, it typically takes a bit of time to be seen at Mayo Rochester (apparently longer in Mayo Clinics in Florida and Arizona). It took me approximately 3+ weeks to get an initial appointment as a self-referred patient from distant Alaska. Some other renowned cancer centers with expertise in pancreatic cancer say they can see patients somewhat sooner (1.5 - 2 weeks) but I don't really know.
2. If you consider or elect to go somewhere else I urge you only to connect with cancer centers of excellence around the country, e.g., MD Anderson, MSKK, John Hopkins, etc.
3. Of course, the sooner definitive diagnosis and treatment begins, the likelihood of a better outcome.
FYI, there are several folks in this pancreatic cancer group fighting this disease who have an extraordinary amount of awareness of pancreatic cancer and offer informed advice. The moderator for this pancreatic cancer group, Colleen Young, is a very helpful resource as well. And of course PanCAN, the Pancreatic Action Network is a good source of information as well. https://pancan.org/facing-pancreatic-cancer/
I hope this helps a bit.
Best wishes to you and your husband going forward.

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Sorry, I think I replied in the wrong place. Anyway, thank you, this is really great information. As I'm sure you know, right now we're just overwelmed with this diagnosis. My father passed away from it 7 years ago.

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@julius6

My name is Julius Butu. I am a Nigerian and live in Abuja
My younger brother (58) had been diagnosed with pancreas tumor.
Where can I receive the best medical attention in US or Europe?

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PanCAN.org provides lists of pancreatic cancer centers in the U.S. You can search specific geographic locations if that's important and then evaluate your choices based on statistics, such as the number of surgeries, surgical procedures, treatments, patients, if they do research, trials, etc. It can be so difficult and confusing deciding on the best course of action when you are confronted with this disease. No one is ever prepared for navigating the pancreatic cancer landscape. Wish you well in finding the best for your brother.

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@wjk

@silver182 I face more big decisions in 4 weeks. I'm scheduled for a Whipple next month (two previous surgery dates in January and February postponed due due elevated CA 19.9 levels). If you don't mind sharing, I have a couple of questions for you.
1. At the time of your Whipple, what was the type, location and Stage of your cancer?
2. If you can recall, what was your CA 19.9 value just prior to surgery?
3. Where did you get your Whipple?
Thanks in advance. It's refreshing to hear a bit of your history and your excellent outcome.
Good on ya.

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Hi there! I had my pylorus preserving Whipple on February 9th. Type (determined after surgery) was adenisquamous carcinoma in the head of the pancreas, stage was 2 (3.5 cm tumor, 3 lymph nodes and nerve tissue impacted but no other metastases). CA 19-9 was around 160. Surgery was done at Princess Margaret Hospital in Toronto, they are excellent.
I had 2 immunotherapy infusions prior to Whipple. Starting 12 rounds of Folfirinox next Friday.
Best of luck with your treatment!

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@dalegantous - Thanks so much for your reply! A few follow up questions if you don't mind. Was your pylorus preserving Whipple done laparoscopically? What were the two immunotherapy infusions you received? How's your Whipple recovery going 7 weeks after Whipple?
Based on my neoadjuvant chemotherapy of 4 cycles of Folirinox and comments by others (before discontinuing it due to extraordinarily severe reactions), be prepared. There may be some rough sledding ahead for you.
All the best to you.

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@wjk

@dalegantous - Thanks so much for your reply! A few follow up questions if you don't mind. Was your pylorus preserving Whipple done laparoscopically? What were the two immunotherapy infusions you received? How's your Whipple recovery going 7 weeks after Whipple?
Based on my neoadjuvant chemotherapy of 4 cycles of Folirinox and comments by others (before discontinuing it due to extraordinarily severe reactions), be prepared. There may be some rough sledding ahead for you.
All the best to you.

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Thank you! Yes I'm expecting tough sledding with the Folfirinox, just gotta do it!
Answers to your questions:
My Whipple was done openly, not laparoscopically. Surgeon was able to remove 26 lymph nodes, 3 compromised. Immunotherapy infusions were durvalumab and oleclumab. Whipple recovery is going great! I did a lot of walking as soon as I got out of hospital, aiming for 6000+ steps a day. Also I ate tons of protein before going in for surgery, it wasn't easy but very helpful for recovery. I'm able to pretty much eat full meals now. I was fatigued in the morning (after pooping and eating breakfast) but that has pretty much subsided now. Some occasional upset stomach but doesn't last long. I still have a partial collapse of my lower right lung, I should have brought an incentive spirometer home from the hospital with me - just ordered one on Amazon to help me focus on re-expanding that. Just makes it a bit hard to take a very deep breath. But overall I am doing great.
One thing, I had tried to go without the Creon, big mistake, had a lot of diarrhea in the hospital and for 5 days after. Now I take 3 with large meals, 2 with snacks, and all is fine again. Look up the Bristol stool chart, aim for Type 3 or 4 haha!
Best of luck to you!

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