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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.

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Mentor
Turkey, Volunteer Mentor | @tomrennie | Jul 4 7:13pm
In reply to @snydermark1 "I feel good for the most part. I’m on chemotherapy every other week. I developed a..." + (show)
Profile picture for snydermark1 @snydermark1

I feel good for the most part. I’m on chemotherapy every other week. I developed a DVT in my left leg, so I’m on Eloquis and a skin rash from one of the chemo drugs which is being treated with Triacinolone cream and Prednisone. I am at the Mayo which is the best place to be.

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@snydermark1 Thanks for the update. What chemo are you on?

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snydermark1 | @snydermark1 | Jul 4 4:50pm

I feel good for the most part. I’m on chemotherapy every other week. I developed a DVT in my left leg, so I’m on Eloquis and a skin rash from one of the chemo drugs which is being treated with Triacinolone cream and Prednisone. I am at the Mayo which is the best place to be.

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1 reply
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Mentor
Turkey, Volunteer Mentor | @tomrennie | Jul 4 3:42pm
In reply to @snydermark1 "@73faith Get a CT as soon as you can. When I got my CT I lost..." + (show)
Profile picture for snydermark1 @snydermark1

@73faith Get a CT as soon as you can. When I got my CT I lost 10 lbs to 185. I had mid flank back pain on the right side. I lost my appetite. The CT showed a tumor on my pancreas. It was malignant and had metastasized. The back pain was from the tumor pushing against everything including my stomach which took away my appetite.

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@snydermark1 Hi and welcome to Mayo Connect. Sorry to hear about your diagnosis. How are you feeling? Are you on any treatment?

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56pan | @56pan | Jul 4 3:35pm
In reply to @anne7573217 "@73faith Dear Loretta, I don't want to scare you, but you described exactly what I experienced...." + (show)
Profile picture for anne7573217 @anne7573217

@73faith Dear Loretta, I don't want to scare you, but you described exactly what I experienced. I usually weighed around 112 lbs and had dropped to 101 lbs. Any intentional weight loss should be a red flag. Sadly, I saw three doctors before one said okay we'll do a scan just to be sure nothing is going on. I can't diagnose you, but I can encourage you to advocate for yourself and be firm, this needs to be checked out.

Prayer and best wishes, Anne in St. Paul

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@anne7573217 "I can't diagnose you, but I can encourage you to advocate for yourself and be firm, this needs to be checked out." Yes, and soon. I was very lucky to have my acinar cell pancreatic cancer diagnosed at the ER.

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anne7573217 | @anne7573217 | Jul 3 11:04am
In reply to @73faith "Hello, my name is Loretta. I’ve been very curious about my pancreas symptoms. I have not..." + (show)
Profile picture for 73faith @73faith

Hello, my name is Loretta. I’ve been very curious about my pancreas symptoms. I have not been diagnosed yet, but I have symptoms that I can not ignore. I’m losing weight, I’m at 109.6 , I used to be at 117. Back pain that don’t go away, really no desire to eat. I’ve been having problems with chronic pancreatic the last few years. Ate these symptoms leading towards pancreatic cancer? Any thought would greatly be appreciated. Bless you all. Loretta

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@73faith Dear Loretta, I don't want to scare you, but you described exactly what I experienced. I usually weighed around 112 lbs and had dropped to 101 lbs. Any intentional weight loss should be a red flag. Sadly, I saw three doctors before one said okay we'll do a scan just to be sure nothing is going on. I can't diagnose you, but I can encourage you to advocate for yourself and be firm, this needs to be checked out.

Prayer and best wishes, Anne in St. Paul

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1 reply
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snydermark1 | @snydermark1 | Jul 3 10:33am
In reply to @73faith "Hello, my name is Loretta. I’ve been very curious about my pancreas symptoms. I have not..." + (show)
Profile picture for 73faith @73faith

Hello, my name is Loretta. I’ve been very curious about my pancreas symptoms. I have not been diagnosed yet, but I have symptoms that I can not ignore. I’m losing weight, I’m at 109.6 , I used to be at 117. Back pain that don’t go away, really no desire to eat. I’ve been having problems with chronic pancreatic the last few years. Ate these symptoms leading towards pancreatic cancer? Any thought would greatly be appreciated. Bless you all. Loretta

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@73faith Get a CT as soon as you can. When I got my CT I lost 10 lbs to 185. I had mid flank back pain on the right side. I lost my appetite. The CT showed a tumor on my pancreas. It was malignant and had metastasized. The back pain was from the tumor pushing against everything including my stomach which took away my appetite.

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1 reply
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Rubyslippers | @triciaot | Jul 2 2:39pm

I saw this quote in Nature made me think of this group!

“There is something profound in being trusted to carry someone’s worst news with enough care that the weight becomes, if not lighter, then at least shared.”

- Oncologist Khushali Jhaveri

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Mentor
Teresa, Volunteer Mentor | @hopeful33250 | May 14 9:01am
In reply to @73faith "Hello, my name is Loretta. I’ve been very curious about my pancreas symptoms. I have not..." + (show)
Profile picture for 73faith @73faith

Hello, my name is Loretta. I’ve been very curious about my pancreas symptoms. I have not been diagnosed yet, but I have symptoms that I can not ignore. I’m losing weight, I’m at 109.6 , I used to be at 117. Back pain that don’t go away, really no desire to eat. I’ve been having problems with chronic pancreatic the last few years. Ate these symptoms leading towards pancreatic cancer? Any thought would greatly be appreciated. Bless you all. Loretta

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Hello @73faith

I am sorry to hear that you have been experiencing these uncomfortable symptoms without any diagnostic answers. How long have you been experiencing weight loss and back pain?

Will you share what types of tests have been done so far to reach a diagnosis?

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Marsha | @gmapri | May 14 8:58am
In reply to @73faith "Hello, my name is Loretta. I’ve been very curious about my pancreas symptoms. I have not..." + (show)
Profile picture for 73faith @73faith

Hello, my name is Loretta. I’ve been very curious about my pancreas symptoms. I have not been diagnosed yet, but I have symptoms that I can not ignore. I’m losing weight, I’m at 109.6 , I used to be at 117. Back pain that don’t go away, really no desire to eat. I’ve been having problems with chronic pancreatic the last few years. Ate these symptoms leading towards pancreatic cancer? Any thought would greatly be appreciated. Bless you all. Loretta

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@73faith I had pancreatitis symptoms, leading my doctor to order a CT scan to confirm, and that is when they found tumors in the pancreas and liver. I encourage you to request a CT scan to at least rule out one or both.

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gsf | @gsf | May 14 8:29am
In reply to @73faith "Hello, my name is Loretta. I’ve been very curious about my pancreas symptoms. I have not..." + (show)
Profile picture for 73faith @73faith

Hello, my name is Loretta. I’ve been very curious about my pancreas symptoms. I have not been diagnosed yet, but I have symptoms that I can not ignore. I’m losing weight, I’m at 109.6 , I used to be at 117. Back pain that don’t go away, really no desire to eat. I’ve been having problems with chronic pancreatic the last few years. Ate these symptoms leading towards pancreatic cancer? Any thought would greatly be appreciated. Bless you all. Loretta

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@73faith I am no medical professional but my opinion Loretta is that you shouldn't wait to get to your doctor and ask for a CT scan. My wife had symptoms very similar to yours, saw a GI doctor who focused on GI testing and didn't order a scan. She finally went to her primary care doctor who ordered a scan that was positive for a mass on her pancreas. Six months had. gone by. So when her cancer was discovered, it was locally advanced (wrapped around the GMV and GMA vessels. I sincerely hope a scan will be negative in your case. Good luck!

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