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.

@sprinter345

Hi-
My husband struggled in his first few rounds but then they added a low dose of steroids and anti nausea drugs and it helped tremendously. Also, the medical marijuana - just two puffs- really helped his appetite.
I wish her well.

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Thank you @sprinter345

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@thawk32

Hi,
Everyone tolerates chemo different. I thank god I’m one of the lucky ones having done 38 treatments and feeling pretty good. If your sister isn’t eating much have her drink Ensure so her body gets what she needs. The hospital should have a social worker to get her samples and coupons to save money. Also have her talk to an nutritionist to help her figure out what to do. Sending prayers 🙏🏻🙏🏻🙏🏻

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Thank you @thawk32 . Very useful advise. Will try the Ensure. Will try anything that is going to improve her quality of life

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An 8mm dilated pancreatic duct was found incidental to a CT scan for diverticulitis. I have had this for 9 years but was only told recently. I have IPMN in the head of the pancreas. Biopsy via EUS/ERCP was negative. Two doctors feel I should have a prophylactic Whipple as I am in good health, no underlying conditions. Very conflicted. I am 70. Would appreciate input.

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Hello. I am a 75 year old woman who had no precursors for this cancer.
I was diagnosed in Oct 2022 and have undergone 4 chemo sessions. The CT after the third chemo showed the cancer had advanced by 1/2 cm rather than shrinking. I am not tolerating the chemo well and wondering what other options there may be?

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I understand radiation can be used. I had a consultation at Memorial Sloan Kettering Cancer Center in NYC. I am glad I went to a cancer center which is a recognized center of excellence for pancreatic cancer care. If there is one near you, I highly recommend making your way to one.

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Hello,

I’ve posted before and just wanted to ‘check in’… it’s a comfort to talk to someone…

This coming Monday, since we are in Florida, I am going for my 3rd contrast MRI @ Jacksonville, Mayo (first 2 done in Rochester along with an EUS). They want to monitor as the 2nd MRI was inconclusive whether or not my cyst is growing or whether it was just the angle of the ‘slicing’ of the MRI picture.

My questions are: Is this a normal explanation and possible? How long do they ‘monitor’ a cyst? My CA count in October was ‘15’, previously it was ‘16’. I do not have any other symptoms, nor do I have dramatic weight loss.

I had a consultation with one of the surgeons who told me that where my cyst is located, there is an 85% chance it’s benign and that since I am a bit overweight (250 lbs / 5’9) the Whipple surgery would be risky. Said that even at Mayo Rochester the mortality rate is 1-2%. I am trying to lose weight to make my health condition easier, but my concern is when do they make the decision to remove my cyst or does it have to become cancerous first? (That scares me too).

Any thoughts or similar situations people can share are appreciated. Thanks .

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@mikewdby

Hello,

I’ve posted before and just wanted to ‘check in’… it’s a comfort to talk to someone…

This coming Monday, since we are in Florida, I am going for my 3rd contrast MRI @ Jacksonville, Mayo (first 2 done in Rochester along with an EUS). They want to monitor as the 2nd MRI was inconclusive whether or not my cyst is growing or whether it was just the angle of the ‘slicing’ of the MRI picture.

My questions are: Is this a normal explanation and possible? How long do they ‘monitor’ a cyst? My CA count in October was ‘15’, previously it was ‘16’. I do not have any other symptoms, nor do I have dramatic weight loss.

I had a consultation with one of the surgeons who told me that where my cyst is located, there is an 85% chance it’s benign and that since I am a bit overweight (250 lbs / 5’9) the Whipple surgery would be risky. Said that even at Mayo Rochester the mortality rate is 1-2%. I am trying to lose weight to make my health condition easier, but my concern is when do they make the decision to remove my cyst or does it have to become cancerous first? (That scares me too).

Any thoughts or similar situations people can share are appreciated. Thanks .

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I have a friend with a cyst and she gets regular monitoring scans. She's not at Mayo, but the center where she goes wants to monitor it. From what I have read, they are typically benign, but most centers will want to keep an eye on them to watch for any changes. You should talk to your doctor and ask them questions until you are comfortable with the answers. You can always seek a second opinion.

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@mikewdby

Hello,

I’ve posted before and just wanted to ‘check in’… it’s a comfort to talk to someone…

This coming Monday, since we are in Florida, I am going for my 3rd contrast MRI @ Jacksonville, Mayo (first 2 done in Rochester along with an EUS). They want to monitor as the 2nd MRI was inconclusive whether or not my cyst is growing or whether it was just the angle of the ‘slicing’ of the MRI picture.

My questions are: Is this a normal explanation and possible? How long do they ‘monitor’ a cyst? My CA count in October was ‘15’, previously it was ‘16’. I do not have any other symptoms, nor do I have dramatic weight loss.

I had a consultation with one of the surgeons who told me that where my cyst is located, there is an 85% chance it’s benign and that since I am a bit overweight (250 lbs / 5’9) the Whipple surgery would be risky. Said that even at Mayo Rochester the mortality rate is 1-2%. I am trying to lose weight to make my health condition easier, but my concern is when do they make the decision to remove my cyst or does it have to become cancerous first? (That scares me too).

Any thoughts or similar situations people can share are appreciated. Thanks .

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Hi, not sure if this is helpful, but I will relay my experience, even though everyone is different. I had an MRI in 2021, after unexplained weight loss, that showed a 2cm IPMN cyst in the tail of my pancreas. The EUS came back negative. There was a little involvement with main duct. Decision was made to monitor again in a year. In 2022 the cyst was 2.1cm, but main duct around the cyst was noticably dilated. Even though the cyst had not grown considerably, the area around it was suspicious. Then I had a distal pancreatectomy, and an adenocarcinoma was found, but cleanly removed with no local spread. I am stage 1b pancreatic cancer and undergoing chemo. I think sometimes it's not always the size of the cyst, but conditions around the cyst and characteristics of the cyst that could determine action. I hope this is somewhat helpful.

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Diagnosed with adenocarcinoma in tail of pancreas stage 2A. My regimen is chemo followed by resection surgery then chemo again. Just started the chemo yesterday and feel I am doing ok so far. A lot of nausea and trouble swallowing anything cold or cool. I have been able to go out walking with my dog so we are both happy! I hope to be cancer free in about 8 months but not looking forward to the process. Research is overwhelming me and I get occasional anxiety. Hoping to connect with others experiencing this and commiserate. I am starting in good health and hope to be encouraged and encourage others!

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You have a great attitude. Keep it up.
I had the Whipple surgery at the end of June.
Two more chemo treatments to go. I have a CT scan this coming Thursday.

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