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?

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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@marvinjsturing

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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@marvinjsturing
Congratulations, Marvin! Praying that this resting period will bring healing and hope. Healing is a process and you are a great example of persistence and faithfulness to the healing process.

Liked by marvinjsturing

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@marvinjsturing

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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Checking in.
@marvinjsturing how are you feeling post radiation?

@beachdog, any luck in finding a Creon alternative that works for your wife? How is she managing to get enough nutrition?

@sunshine041594, how is your husband doing?

@thally5299, how's your mom? She's finished chemo now, right? How are the side effects?

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@colleenyoung

Checking in.
@marvinjsturing how are you feeling post radiation?

@beachdog, any luck in finding a Creon alternative that works for your wife? How is she managing to get enough nutrition?

@sunshine041594, how is your husband doing?

@thally5299, how's your mom? She's finished chemo now, right? How are the side effects?

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@colleenyoung my wife has gotten a lower dose Creon. 12k units instead of the 36k units. The capsules are smaller and she can swallow them. Previously was mixing the Creon with applesauce which was probably making the Creon ineffective since it's actually designed to slow release in the intestines not be immediately taken into the stomach. So far she can tolerate 1-2 12k capsules with each eating. The local gastroenterologist also prescribed a different enzyme, zenpep. Haven't filled the prescription yet since she's started using the Creon.

We also finally had a session with a dietician (why in the world it took the oncology staff 2 months to make the referral is a whole other story). The dietician was helpful with suggestions on supplementing to increase protein without using whey and pea powders which she also reacts to.

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@colleenyoung

Checking in.
@marvinjsturing how are you feeling post radiation?

@beachdog, any luck in finding a Creon alternative that works for your wife? How is she managing to get enough nutrition?

@sunshine041594, how is your husband doing?

@thally5299, how's your mom? She's finished chemo now, right? How are the side effects?

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Hi Colleen, Thank you for asking. My mom has done quite a bit and is still on Gem/Abrax (almost done with this). Her issue is that she did Fulfirinox before her Whipple in Sept 2019, then started on it again after Whipple. Her CA-A 19 kept going up (nothing on scans) so changed to Gem/Abrax. Her CA-A 19 kept going up (nothing on CT or PET scans). Took her for second opinion…they recommended radiation on pancreas. We did that and now are finishing up her Gem/Abrax cycles. Her CA-A 19 is in the 2000s and nothing shows on MRI, CT Scan or PET scan. We'll see now end of May, she'll be done with this chemo and have another scan. God willing nothing shows and her tumor markers start going down. Overall, she's feeling better than ever, so that's a great thing. It's been a little over a year since her diagnosis and it's been a very difficult road, so the fact that she feels better is great news 🙂 One day at a time. Thank you!

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@colleenyoung

Checking in.
@marvinjsturing how are you feeling post radiation?

@beachdog, any luck in finding a Creon alternative that works for your wife? How is she managing to get enough nutrition?

@sunshine041594, how is your husband doing?

@thally5299, how's your mom? She's finished chemo now, right? How are the side effects?

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@colleenyoung My wife brought me into ER Saturday night with nausea a and chills. The did several blood tests including a blood culture, gave me meds for the nausea and sent me home. Sunday after lunch the hospital called and said I had an E. coli blood infection. They told me I had to come back to be admitted the hospital. They ran numerous tests and can't find the source of the infection. They put in a tunnel cath this morning and are talking about giving me antibiotics daily for 2 weeks. If they can get everything arranged, I will be going home this afternoon

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@marvinjsturing

@colleenyoung My wife brought me into ER Saturday night with nausea a and chills. The did several blood tests including a blood culture, gave me meds for the nausea and sent me home. Sunday after lunch the hospital called and said I had an E. coli blood infection. They told me I had to come back to be admitted the hospital. They ran numerous tests and can't find the source of the infection. They put in a tunnel cath this morning and are talking about giving me antibiotics daily for 2 weeks. If they can get everything arranged, I will be going home this afternoon

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It's just not a smooth ride, is it?! I took my husband to our local ER Sunday night and he was transported to Mayo right away – blood loss and cultures indicated infections, which he also had while in the hospital three weeks ago for his Whipple procedure. Everything in recovery was going well until this episode. Eating fine after Whipple but it seemed tough to gain any weight and energy – maybe it was because the infections were still there, who knows! Hopefully he'll get back on track after this visit and not have another emergency. They are still not sure what caused the sudden bleeding but he'll remain in their care until they have some answers. Nothing appears to be leaking on scans. It sure is a drag not being there for him.

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