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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 Teresa, Volunteer Mentor
Mentor
Teresa, Volunteer Mentor | @hopeful33250 | Nov 15, 2024
In reply to @mohammed01 "Hello, my father had chronic pancreatitis and had to go through the Whipple procedure as it..." + (show)
Profile picture for mohammed01 @mohammed01

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.

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Hello @mohammed01 and welcome to Mayo Connect. I can understand your concern about your father's continued weight loss and inability to eat without pain and diarrhea. As @gamaryanne has suggested, a digestive enzyme like Creon might be helpful to him. Most patients who have had surgery use this type of enzyme. Is his doctor willing to prescribe this type of medication for your dad? Here is a link with information about Creon, https://www.creoninfo.com/.

You mention that your dad is not able to eat a full meal without symptoms. Has he tried eating multiple, small meals throughout the day?

Since his surgery was three years ago and he has lost 120 pounds, have you considered getting a second opinion? If you do get a second opinion, it would be good to get that consultation from a Pancreatic Center of Excellence. Mayo Clinic would be a great place for this type of consultation. Here is a link with appointment information,
http://mayocl.in/1mtmR63.
If an appointment with Mayo Clinic is not possible for any reason, then the Pancreas Foundation website might be helpful. Here is a link where you can input your location and find the nearest center of excellence, https://pancreasfoundation.org/patient-resources/npf-centers-of-excellence/

I look forward to hearing from you again. Will you continue to post with any questions or concerns?

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Profile picture for gracect
gracect | @gracect | Nov 15, 2024

ZenPep, very similar to Creon, helped my husband tremendously.

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mchris327 | @mchris327 | Nov 15, 2024
In reply to @tjk "Hello mchris327. I am sorry to hear and is understandable to be overwhelmed. I am a..." + (show)
Profile picture for TimK1716 @tjk

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!

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Thank you for your response and support. I’m in a small town and have reached out to PanCan who gave me some great advice as well. I think I have a few good doctors in my care team and in the beginning of my journey. Again thank you for your support!

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1 reply
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Mentor
Teresa, Volunteer Mentor | @hopeful33250 | Nov 15, 2024
In reply to @tjk "Hello mchris327. I am sorry to hear and is understandable to be overwhelmed. I am a..." + (show)
Profile picture for TimK1716 @tjk

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!

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Hello @tjk and welcome to the Pancreatic Cancer support group on Mayo Connect. I appreciate you sharing your cancer journey here on Connect. It really does encourage others to hear stories of successful treatment and life after a pancreatic cancer diagnosis.

I look forward to hearing from you again. As this is your first post, would you care to share more about your journey. Such as how you found referrals and the type of treatments you have received?

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1 reply
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marienewland | @mnewland99 | Nov 14, 2024
In reply to @tjk "Hello mchris327. I am sorry to hear and is understandable to be overwhelmed. I am a..." + (show)
Profile picture for TimK1716 @tjk

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!

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10 year survivor and still on the forum reaching out to others! So fantastic and I hope I can say the same someday; only 8 more years to go!

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TimK1716 | @tjk | Nov 14, 2024
In reply to @mchris327 "Hi allow me to introduce myself mchris327. I’m diagnosed with pancreatic cancer yesterday. So overwhelming! To..." + (show)
Profile picture for mchris327 @mchris327

Hi allow me to introduce myself mchris327. I’m diagnosed with pancreatic cancer yesterday. So overwhelming! To say the least. What next? PET, radiation, chem and surgery. I live in a very small town ( unincorporated 250 +, and that two hundred and fifty! What next? No know cancer besides my brother with liver cancer. He’s been struggling with it for quite a few years. I do have Cirrhosis but not liver cancer. Don’t know what stage my cancer is, but have read that normally not diagnosed until you have symptoms which could mean your cancer is beyond stage one. And info would be greatly appreciated. And I have to say I’m sorry that anyone has to endure this disease.

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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!

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3 replies
Profile picture for ronninemire
ronninemire | @ronninemire | Nov 14, 2024

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.

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gamaryanne | @gamaryanne | Nov 14, 2024
In reply to @mohammed01 "Hello, my father had chronic pancreatitis and had to go through the Whipple procedure as it..." + (show)
Profile picture for mohammed01 @mohammed01

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.

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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

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Profile picture for mohammed01
mohammed01 | @mohammed01 | Nov 13, 2024

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.

REPLY
2 replies
Profile picture for marienewland
marienewland | @mnewland99 | Nov 10, 2024
In reply to @ronninemire "Yes, the spellcheck is funny at times and of course I didn’t check that post before..." + (show)
Profile picture for ronninemire @ronninemire

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.

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Wow! May I suggest buying Lotto tickets, lol.

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