Pancreatic Cancer Group: Introduce yourself and connect with others

Posted by Colleen Young @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?

Best of luck tomorrow!!!

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@buckslayer

My husband and I were at Mayo Rochester today for final tests in anticipation of his Whipple procedure with Dr. Truty tomorrow. It was like a ghost town but we felt very safe from the virus with the screening checkpoints they had at every entrance, and most people we did see were wearing masks. It was amazing getting a parking spot up close – very few cars in the ramp and few people in the waiting rooms. We are very thankful to be able to continue my husband's course of treatment given all the surgeries that were cancelled lately. We are looking forward to him being cured after a very long year of chemo and radiation!

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Thanks for stepping in and painting a picture for @mayojoe7 of what Mayo Clinic is like these days.

Sleep well, @fassbinder and all the best for tomorrow. I look forward to hearing from you, while you wait and need to talk or when you have news.

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@colleenyoung

@mayojoe7, will your first consult be by phone or in person? If in person, @marvinjsturing can help you know what you can expect about Mayo Clinic Rochester with COVID-19 protocols in place. He was just there, or even still, is for radiation treatments. Unfortunately, I just found out the Cancer Education Center in the Gonda building is closed. It's a great place to get information and to relax between appointments.

Joe: Do you have a list of questions ready for Dr. Mahipal? Anything you'd like to ask Connect members as you prepare for your appointment?

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Hello-we will be meeting with Dr. Mahipal in person tomorrow. My wife and I are very glad to get the process moving. I have several questions prepared-mostly about the plan, chemo timing & frequency, what to expect, etc. We live in the Twin Cities so I could potentially have chemo treatment at Mayo-that is currently the plan. I believe I will most likely have Fofirinox or a combination of Gemcitabine/Abraxane. When I had hodgkins chemo, I had a groshong catheter placed which made chemo intake less painful. May not be necessary for this chemo treatment. So, I have questions like that. I will also be asking about other treatment option down the road, i.e. radiation, whipple procedure, immunotherapy considerations, clinical trial options, etc. Lots to talk about but we are very glad to be getting started. If there is anything that jumps out to folks we should ask I would certainly welcome the advice. Joe

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Hello, I just received an email from PanCan that mentioned there are some webinars setup for "Navigating Pancreatic Cancer Care During the Coronavirus Crisis" Not sure if I am supposed to do this, but thought others may benefit.

Tuesday, April 14, 2020 • 2 – 3 p.m. PDT

Please note time zone differences:
3 – 4 p.m. MDT
4 – 5 p.m. CDT
5 – 6 p.m. EDT

After registering, you will receive a confirmation email containing a link to join the webinar. The email will also include instructions for the audio portion of the webinar:
https://www.pancan.org/facing-pancreatic-cancer/patient-services/educational-events/

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@marvinjsturing

Hi, everyone. I was diagnosed with pancreatic cancer on May 9, 2014. My Whipple was performed by Dr. Farnel at Mayo in Rochester on June 5, 2014. The surgery took 8 1/2 hours. The doctor removed most of my pancreas, part of my stomach and my duodenum. What was left of my pancreas was so bad that the doctor didn't even connect it back into my digestive system. I was Staged at 2b because cancer was found in 1 of the 64 lymph nodes that were removed. Surgery was followed by 6 months (18 infusions] of gemcitabine or gemzar. My last treatment was December 30, 2014. I was looking forward to a new year with out any treatments only to discover that I had a very rare reaction to the chemo and developed atypical Hemolytic Uremic Syndrome. I spent the next 10 months going to Mayo for treatment. By the time they got the aHUS under control, my kidney function was down to 15%. In order to be listed on the kidney transplant list, I had to be cancer free for 5 years. That happened last June. My sister had offered to be a donor for me. Two weeks before she was scheduled for her testing, she was diagnosed with mantel cell lymphoma. She has now finished her chemo and is working on getting a stem cell transplant. I am not yet on dialysis. As far as I know, I do not have anyone working on becoming a donor so I am now waiting for a deceased donor. At this time I am grateful just to be alive. The biggest issue I deal with on a daily basis is fatigue. I typically need a nap in the afternoon. Because in essence I have no pancreas I am treated as a Type I diabetic and have to take Creon every time I eat. Other than that, I have a pretty good quality of life. I often tell people that other than diabetes, pancreatic cancer and chronic kidney disease, I am in perfect health!

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How are you doing?

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@drewgrebe I had radiation treatment 21 this morning. Four more to go. Mostly I am feeling good. A touch of nausea right after my treatment but it passes quickly. There must be a little bit of radiation burn to my lower esophagus because sometimes there is slight pain when I swallow food. The biggest issue is fatigue. But I can take naps whenever I want because I am not going anywhere except to my daily radiation treatments. I meet with my radiologist every Tuesday. This week I was told that they consider this to be palliative care. I have been contacted by Mayo about a clinical trial that is currently going on that I can apply to participate in. I need to find out more about before I sign up. Taking everything into consideration, I'm getting along pretty good!

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@marvinjsturing

@drewgrebe I had radiation treatment 21 this morning. Four more to go. Mostly I am feeling good. A touch of nausea right after my treatment but it passes quickly. There must be a little bit of radiation burn to my lower esophagus because sometimes there is slight pain when I swallow food. The biggest issue is fatigue. But I can take naps whenever I want because I am not going anywhere except to my daily radiation treatments. I meet with my radiologist every Tuesday. This week I was told that they consider this to be palliative care. I have been contacted by Mayo about a clinical trial that is currently going on that I can apply to participate in. I need to find out more about before I sign up. Taking everything into consideration, I'm getting along pretty good!

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@marvinjsturing, so good to hear from you. Like @drewgrebe I was thinking about you today. You mention that the goal of this radiation is palliative rather than curative. Have you been in touch with a palliative care team at Mayo Rochester? That may be something you want to look into while you're there and to have set up for when you return home
– Mayo's Palliative Care Specialty Group https://www.mayoclinic.org/departments-centers/general-internal-medicine/palliative-care-minnesota/overview

@kjrita, of course you can post the link to PanCan's educational webinars. I fixed the URL so that it goes to the page on their website. I think the link you provided was from an email you received, which didn't work for others.

@drewgrebe How is your fiancée doing? How many more chemo treatments left to go?

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@treadmillann

Hello, I was diagnosed with pancreatic cancer in April 2019, had whipple surgery in May 2019. In the report they are calling this Ampullary cancer but still took 1/2 of my pancreas along with parts of what goes along with this type of surgery. I have had a terrible reaction to Creon, switched to over the counter Papaya Enzymes. They also became a problem so now fighting this with foods that build digestive enzymes but still having issues with stool problems. I feel very lucky compared to marvinjsturing, hang in there Marvin. Does anyone have any suggesting on how to handle my issue?

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Hello @treadmillann My wife has also had terrible reaction to the Creon, severe stomach pain and diarrhea. To make matters worse, the recommendation from the surgical staff was always the same, increase the Creon dosage. She lost over 20% of her body weight before we just decided to stop the Creon. She has improved marginally by using Imodium with the docs approval but still has intermittent diarrhea. At least the weight loss seems to have bottomed out for now. OTC papaya enzymes is the first possible alternative I've heard and will try them. How did you learn about digestive enzymes building food? I need to do more research.

How are you doing now? What is working for you?

PS my wife thinks that she can't take the Creon because it is a porcine derivative and she might be allergic since she's never eaten pork products.

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@sunshine041594

Hi my name is Marlene
My dear cousin was diagnosed with stage 4.
Just wondering if everyone was aware John Hopkins University has a vacine and surgical procedures that sound promising

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Yes, my wife was originally a candidate in the Johns Hopkins vaccine clinical trial but after researching further (and molecular analysis of her tumor), we opted out. She actually had the PALB2 mutation which allowed folfironox (5fu) to very effectively attack the tumor. Participation in the trial would not be necessary and wouldn't have furthered their vaccine research since they were targeting a different (more common) set of mutations.

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@baileycody

Hi, my husband was diagnosed with pancreatic cancer Jan 2017, did chemo, had Whipple May 2017, followed by more chemo. Had been NED until Jan 2020 when we found out the cancer has returned. He is on chemo and radiation is being recommended. I would like to know others experiences with radiation and types of chemo. He is scheduled for a endoscopy tomorrow, partially to put in some “gold beads” as markers for the radiation. Has anyone else had this? With COVID I don’t want him to have the procedure if it’s not absolutely necessary.

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My wife had the gold fiducials procedure in preparation for the radiation, SBRT. She tolerated the fiducials procedure well. The gold markers were used in her case because they weren't doing general radiation. The SBRT is targeted and causes much less collateral damage. Not every treatment center has the SBRT capability. Good luck with the treatments.

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Hi all, I guess I should post an intro since I jumped in with other posts already.

My wife was diagnosed with stage 3 pancan in July 2019 shortly after her 61st birthday. We met with our local gastroenterologist who connected us with the local pancan surgeon as well as the pancan specialists at Johns Hopkins. The local surgeon's diagnosis was marginally resectable tumor in the body with close proximity or involvement of celiac trunk. This was confirmed by JHH team. The course of treatment was laid out as 6-8 folfironox cycles, followed by a JHH clinical trial of keytruda and a pancan vaccine, then SBRT (radiation), then Appleby procedure followed by second cycle of clinical trial then completion of folfironox for a total of 12 cycles.

We opted to get the folfironox treatments locally in Orlando and the rest we would travel to Baltimore. Due to hurricanes and holidays disrupting the chemo schedule she wound up having 9 folfironox cycles before heading back to JHH. This turned into a blessing in disguise because the molecular study of the tumor showed that the folfironox was very effective in treating tumors with PALB2 mutation and that the clinical trial wouldn't be recommended. She was able to proceed to SBRT and surgery.

The Appleby was performed on February 20 at JHH. Surgery took 6.5 hours and they removed 60% of the pancreas, left adrenal gland, gaul bladder, spleen, 23 lymph nodes and resected the celiac trunk. The surgical pathology came back 100 % negative. She wouldn't need anymore chemo cycles.

So that was the good news. Initial outcome is that she is cancer free. The first quarterly scan is scheduled for June, were not sure where this will happen considering the covid19 travel restrictions.

I have written elsewhere about how poorly her surgical recuperation has progressed. She is plagued by chronic diarrhea and stomach pain resulting in weight loss and malnutrition.

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Today was day 25 – my last radiation treatment. For the past 5 weeks, they have been frying my internal workings with high powered X-rays. Now begins a 2-3 month period allowing the body to heal. Once the healing process is complete, they will do a scan to see how successful this treatment was.

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