1. < Pancreatic Cancer
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.

wjk | @wjk | Mar 30 2:15pm
In reply to @dalegantous "Thank you! Yes I'm expecting tough sledding with the Folfirinox, just gotta do it! Answers to..." + (show)
@dalegantous

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!

Jump to this post

Thanks so much! Very helpful. Glad to hear you're 3 for 4. That's a .750 batting average. All star! May the both of us kick this disease's butt.
Thanks again. All the best to you as well.

REPLY
markymarkfl | @markymarkfl | Mar 30 10:53pm
In reply to @dalegantous "Thank you! Yes I'm expecting tough sledding with the Folfirinox, just gotta do it! Answers to..." + (show)
@dalegantous

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!

Jump to this post

@dalegantous , Did you get any measurements of tumor size and CA19-9 before, during, and after treatment with the durvalumab and oleclumab, or an assessment by the trial research team of how effective it was?

Did you have specific mutations or other unique circumstances to enter that trial?

Best wishes on your journey with Folfirinox!

REPLY
1 reply
dalegantous | @dalegantous | Mar 31 5:38am
In reply to @markymarkfl "@dalegantous , Did you get any measurements of tumor size and CA19-9 before, during, and after..." + (show)
@markymarkfl

@dalegantous , Did you get any measurements of tumor size and CA19-9 before, during, and after treatment with the durvalumab and oleclumab, or an assessment by the trial research team of how effective it was?

Did you have specific mutations or other unique circumstances to enter that trial?

Best wishes on your journey with Folfirinox!

Jump to this post

Tumor did not shrink after immunotherapy, however surgery was only a few weeks after the infusions. Tumor size on CT scans was 2.9 cm but at surgery it measured 3.5 cm. Don't know if this was due to tumor growth or just accuracy of CT scans. I've also read about the possibility of pseudoprogression, where the tumor appears to grow after immunotherapy but is not actually growing due to the cancer, but swelling due to the immunotherapy. I have no idea whether that actually applies in my case. CA 19-9 dropped from 165 before infusions to 145 at time of surgery.
Cheers,
Dale

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1 reply
dalegantous | @dalegantous | Mar 31 5:45am
In reply to @dalegantous "Tumor did not shrink after immunotherapy, however surgery was only a few weeks after the infusions...." + (show)
@dalegantous

Tumor did not shrink after immunotherapy, however surgery was only a few weeks after the infusions. Tumor size on CT scans was 2.9 cm but at surgery it measured 3.5 cm. Don't know if this was due to tumor growth or just accuracy of CT scans. I've also read about the possibility of pseudoprogression, where the tumor appears to grow after immunotherapy but is not actually growing due to the cancer, but swelling due to the immunotherapy. I have no idea whether that actually applies in my case. CA 19-9 dropped from 165 before infusions to 145 at time of surgery.
Cheers,
Dale

Jump to this post

Sorry more answers: No assessments from the clinical trials team yet, it's too early. I imagine that will take time. I have no mutations at all. Criteria for entering trial was my tumor had to be resectable, no sign of metastases, and that I had had no other previous treatments for it. Also had to have good liver blood levels (which was tricky because I had been jaundiced, had a bile stent put in and my levels slowly came down to normal just in time). Had to have other tests like HIV.

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Moderator
Colleen Young, Connect Director | @colleenyoung | Mar 31 3:50pm
In reply to @mp2 "My name is Marissa and was diagnosed with metastatic malignant pancreatic cancer stage III. I went..." + (show)
@mp2

My name is Marissa and was diagnosed with metastatic malignant pancreatic cancer stage III. I went to ED with tolerable pain in the left abdomen-radiating to the back. Before this pain, I did not have any symptoms. They did a CT scan and found the CA. It was a big surprise for me and my family Currently, I am on chemotherapy with no plans for surgery because the tumor was clinging near my aorta. In the last CT, the tumor decreased in size. I'm hoping for a great result next CT. I have not experienced any neuropathy but occasional light nauseous feelings after chemotherapy.

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Hi @mp2, welcome. I can imagine this came a big (and unwanted) surprise to you and your family. It sounds like the tumor is responding well to chemotherapy. What chemotherapy are you taking? Are you now taking something prior to infusions to help with the nausea?

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mp2 | @mp2 | Mar 31 8:54pm

I am currently on Gemcitabine and Abraxane. I was given Zofran IV before the introduction of the chemo drugs which helped post chemo. During my chemo procedures, I used ice packs which helped with any neuropathy issue, By the end of April, I will have another CT scan to determine the size of the tumor and staging. Praying for a positive result

REPLY
Moderator
Colleen Young, Connect Director | @colleenyoung | Apr 1 9:32pm
In reply to @vlny2018 "I am Vicki Lynn, my husband was recently diagnosed with pancreatic cancer, March 14th. We're still..." + (show)
@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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Hi @vlny2018, have you submitted a request for an appointment at Mayo Clinic? If not, click this link to get started: http://mayocl.in/1mtmR63

The sooner you submit a request, the sooner you'll hear back, right?

How is the diagnostic testing going? Has your husband's cancer been staged? How are YOU doing?

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vlny2018 | @vlny2018 | Apr 2 8:48am

Hi Colleen,
Thank you for reaching out to me.

We haven’t gotten an appointment with Mayo yet, the intake person said we needed a diagnosis before they could set up an appointment. My husband had a biopsy of a spot on his liver two weeks ago that came back negative. Now we have an appointment tomorrow for a biopsy on his pancreas. Also, his left kidney is being blocked by a mass pushing on the tube going to his bladder. They are going to put a stent into the tube to open it up.

Our frustration is the length of time between the biopsies and the oncology appointments. We waited a week for the oncology appointment just to find out the first biopsy, of the liver, was negative. Now two weeks later before we get the second biopsy. Is this normal? Wouldn’t there be quicker appointments between biopsies? It feels like the cancer is just expanding while we wait for diagnosis. Time is not on our side.

REPLY
2 replies
Mentor
Teresa, Volunteer Mentor | @hopeful33250 | Apr 2 2:17pm
In reply to @vlny2018 "Hi Colleen, Thank you for reaching out to me. We haven’t gotten an appointment with Mayo..." + (show)
@vlny2018

Hi Colleen,
Thank you for reaching out to me.

We haven’t gotten an appointment with Mayo yet, the intake person said we needed a diagnosis before they could set up an appointment. My husband had a biopsy of a spot on his liver two weeks ago that came back negative. Now we have an appointment tomorrow for a biopsy on his pancreas. Also, his left kidney is being blocked by a mass pushing on the tube going to his bladder. They are going to put a stent into the tube to open it up.

Our frustration is the length of time between the biopsies and the oncology appointments. We waited a week for the oncology appointment just to find out the first biopsy, of the liver, was negative. Now two weeks later before we get the second biopsy. Is this normal? Wouldn’t there be quicker appointments between biopsies? It feels like the cancer is just expanding while we wait for diagnosis. Time is not on our side.

Jump to this post

Hello @vlny2018

I just noticed your post directed to Colleen. I agree, with you that quicker appointments would be better, but unfortunately the medical system seems to be overwhelmed and waiting weeks between appointments is more the norm, now.

How is your husband feeling? What are his most bothersome symptoms right now?

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1 reply
markymarkfl | @markymarkfl | Apr 2 7:55pm
In reply to @vlny2018 "Hi Colleen, Thank you for reaching out to me. We haven’t gotten an appointment with Mayo..." + (show)
@vlny2018

Hi Colleen,
Thank you for reaching out to me.

We haven’t gotten an appointment with Mayo yet, the intake person said we needed a diagnosis before they could set up an appointment. My husband had a biopsy of a spot on his liver two weeks ago that came back negative. Now we have an appointment tomorrow for a biopsy on his pancreas. Also, his left kidney is being blocked by a mass pushing on the tube going to his bladder. They are going to put a stent into the tube to open it up.

Our frustration is the length of time between the biopsies and the oncology appointments. We waited a week for the oncology appointment just to find out the first biopsy, of the liver, was negative. Now two weeks later before we get the second biopsy. Is this normal? Wouldn’t there be quicker appointments between biopsies? It feels like the cancer is just expanding while we wait for diagnosis. Time is not on our side.

Jump to this post

"the intake person said we needed a diagnosis before they could set up an appointment."

That was a big frustration trying to get my dad into the Mayo, and an area where I think they could improve.

Two local doctors knew my dad's case was cancer, but argued endlessly over what type it was. Local labs botched tests. We tried getting him into Mayo ASAP so a more competent lung specialist could sort it out, but they wouldn't see him until the locals settled their debate. All or nothing.

You'd think Mayo could set up an "oncology gatekeeper" program -- somewhat of a generalist, but with expedited access to the detailed experts and the ability to direct you to the right one(s).

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