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.

stageivsurvivor | @stageivsurvivor | Mar 13 4:14pm
In reply to @cealia56 "Thank you for sharing. My name is Cealia, HI ya"ll. My pancreatic cancer was just diagnosed,..." + (show)
@cealia56

Thank you for sharing.
My name is Cealia, HI ya"ll.
My pancreatic cancer was just diagnosed, also by accident. I was diagnosed with NAFELD ( Fatty liver disease). 2cm mass found in head of pancreas. They put a stent in due to biliary blockage.
Real new to this side of the bed as I am a retired nurse.
I have a million ?s as a patient. We are blessed to have retired? Moved to FL only 2.5 hours from Mayo clinic.
Is there a newbi's group.
? About what should I get taken care of before chemo starts...

Jump to this post

For those newly diagnosed, two pancreatic cancer advocacy organizations have informative sites with comprehensive articles, webinars and the support services they provide. The Pancreatic Cancer Action Network offers patient mentoring and also can provide information on support group meetings in one’s area as well as groups that conduct meetings by Zoom.
https://pancan.org/facing-pancreatic-cancer/diagnosis/recently-diagnosed/
Let’s win PC.org is very good at providing breaking information on research and clinical trials.
https://letswinpc.org/newly-diagnosed/

REPLY
1 reply
Mentor
Teresa, Volunteer Mentor | @hopeful33250 | Mar 12 9:44am
In reply to @meca "Hola! Acabamos de recibir la noticia de que mi esposo tiene cancer de pancreas y entre..." + (show)
@meca

Hola! Acabamos de recibir la noticia de que mi esposo tiene cancer de pancreas y entre en este grupo de apoyo para mantenernos informados de lo relacionado a esta enfermedad. Estamos positivos de que encontraremos el tratamiento adecuado.

Jump to this post

Hello @meca and welcome to Mayo Connect. I am glad that you found this forum and have an opportunity to talk with others about your husband's pancreatic diagnosis. We have many members in this support group who have lived with this diagnosis for many years, and they will be happy to post with you.

In order for others to share their experiences with you, could you share a bit more about the type of pancreatic cancer and the stage? Also, if any treatment options have been offered, please share that as well.

REPLY
markymarkfl | @markymarkfl | Mar 12 8:37am
In reply to @cealia56 "Thank you for sharing. My name is Cealia, HI ya"ll. My pancreatic cancer was just diagnosed,..." + (show)
@cealia56

Thank you for sharing.
My name is Cealia, HI ya"ll.
My pancreatic cancer was just diagnosed, also by accident. I was diagnosed with NAFELD ( Fatty liver disease). 2cm mass found in head of pancreas. They put a stent in due to biliary blockage.
Real new to this side of the bed as I am a retired nurse.
I have a million ?s as a patient. We are blessed to have retired? Moved to FL only 2.5 hours from Mayo clinic.
Is there a newbi's group.
? About what should I get taken care of before chemo starts...

Jump to this post

Hi @cealia56 , Welcome to Florida and welcome to the group.

There's not a "newbie" area of any sort -- just feel free to post whatever questions, answers, thoughts, or comments you might have here on the forum. You can respond to comments within a discussion, start a new discussion, contact other members via the private message utility (envelope icon in top right corner of screen), and so on.

For those newly diagnosed, the "questions to ask your oncologist" in these two threads might also be useful:
https://connect.mayoclinic.org/discussion/newly-diagnosed-questions-to-ask/
and
https://connect.mayoclinic.org/discussion/which-questions-should-i-ask-my-surgeon-i-think-whipple-is-likely/
Little things to do before chemo starts depends somewhat on what you've already done, but getting a good pre-chemo baseline will help you know how you're responding to treatment. CA19-9 level, CEA level (in case you don't produce CA19-9) and imaging are significant firsts. Sign up with a patient advocate at pancan.org

Germline (hereditary/inherited) mutation and somatic (external / environmental / spontaneous) mutation testing can help inform your treatment. If there was a biopsy taken with enough tissue remaining, consider having it tested. Pancan.org has a KYT (Know Your Tumor) program where they can pay for having your tissue tested at Tempus Labs. A "Signatera" recurrent blood test can also be built from your biopsy tissue, and used as an additional method to gauge response to treatment. (It's a ctDNA test -- measures circulating tumor DNA in your blood.)

Other stuff to consider could be asking about pre-chemo tests to see if you're allergic to any of the ingredients...

I'm sure we'll think of more, but those are a start. I wish you well, and hope you know we're all here to support each other!

REPLY
cealia56 | @cealia56 | Mar 11 9:46pm

Thank you for sharing.
My name is Cealia, HI ya"ll.
My pancreatic cancer was just diagnosed, also by accident. I was diagnosed with NAFELD ( Fatty liver disease). 2cm mass found in head of pancreas. They put a stent in due to biliary blockage.
Real new to this side of the bed as I am a retired nurse.
I have a million ?s as a patient. We are blessed to have retired? Moved to FL only 2.5 hours from Mayo clinic.
Is there a newbi's group.
? About what should I get taken care of before chemo starts...

REPLY
3 replies
meca | @meca | Mar 11 12:30pm

Hola! Acabamos de recibir la noticia de que mi esposo tiene cancer de pancreas y entre en este grupo de apoyo para mantenernos informados de lo relacionado a esta enfermedad. Estamos positivos de que encontraremos el tratamiento adecuado.

REPLY
1 reply
waltsocal | @waltsocal | Mar 11 11:10am
In reply to @markymarkfl "I get chemo every other Friday, which lines up perfectly with my 9/80 work schedule (every..." + (show)
@markymarkfl

I get chemo every other Friday, which lines up perfectly with my 9/80 work schedule (every other Friday off) .

I started feeling sick (Covid) on my off Friday, tested positive the next day. Started the Paxlovid on Sunday, last dose on Thursday. They didn't think one day clearance was enough to avoid interaction with the chemo drugs, but were also going with the old/conservative 5-days-after-symptoms guideline before seeing me again.

I was actually happy to have the break, having gone 27 treatments in a row with no breaks or absences, since I had a short vacation scheduled the following weekend -- it left me with extra energy on the trip. Plus, re-synchronizing with my work schedule would have been a pain.

In hindsight, considering my first recurrence grew from nothing to 1.3 cm in less than 3 months without adjuvant chemo, it's no big surprise the original tumor and its metastatic children resumed growth so quickly after missing one treatment. I was hoping they could stay in their dormant state for that short of a period, but it was not to be. This thing is aggressive.

Now that I'm back on the full-strength chemo, we'll see if the tumors and CA19-9 respond as they did before, or if drug resistance is now in play. The scary part is that for the trial I'm hoping to get into, they require a 30-day washout period before beginning the new treatment, and we now know my cancer will take advantage of any break it can find. 🙁

If there's a bright side to it... it may be that I could possibly have been denied a chance to participate in the trial if my disease appeared stable on the GAC. These events may improve my chance of getting in. Fingers still crossed, and expecting more news next week.

Jump to this post

Hoping that trial comes through for you 👍🏻. I know what you mean about how aggressive things are when you’re off chemo. Starting G&A later this morning. Sure hoping that within a month the CA19 will drop down. It has gone from 330 to over 1,300 in just over a month.

Again, wishing you good luck on getting into the trial.

REPLY
Moderator
Colleen Young, Connect Director | @colleenyoung | Mar 10 6:00pm
In reply to @dalegantous "Hello! My name is Dale, I was diagnosed with pancreatic cancer in December 2023. My cancer..." + (show)
@dalegantous

Hello! My name is Dale, I was diagnosed with pancreatic cancer in December 2023. My cancer was found by accident, I had had my ovaries and fallopian tubes removed in early November, and that surgery irritated my pancreas and gave me pancreatitis. My doctor sent me to emerg to get a CT scan, and lo and behold a tumor was spotted in the head of my pancreas. I quickly got an MRI to confirm suspicion for carcinoma. Had become jaundiced so had an Endoscopy with biopsy and bile stent placement. Early indications were no metastases, tumor was 2.5 cm, no lymphadenopathy, so I was hoping it was caught early enough. My doctor referred me to Princess Margaret hospital in Toronto for treatment, they are a centre of excellence.
I got into an immunotherapy clinical trial, and had 2 infusions of durvalumab and oleclumab in January.
On February 9th I had pylori-preserving Whipple surgery. My recovery is going very well. However I just got the pathology report with what seems like really bad news - metastases was found in 3 out of 25 lymph nodes, and my cancer is adenosquamous carcinoma. Everything I read about adenosquamous is that it is very rare and prognosis is poor. Only thing holding me together is that there is very little data on adenosquamous since it is so rare.
I am starting Folfirinox in early April.
Anyone with experience with adenosquamous or thoughts in general on where I'm at I'd like to hear from you.
Thank you! Dale

Jump to this post

Welcome, @dalegantous. You are in good hand at Princess Margaret Cancer Center. You've been through a lot in a short amount of time. As you mentioned adenosquamous carcinoma of the pancreas (ASCP) is rare. Here's a link to a discussion dedicated to ASCP, where you can connect with others. I look forward to seeing you post there.

- Adenosquamous carcinoma of the pancreas (ASCP)
https://connect.mayoclinic.org/discussion/adenosquamous-pancreatic-cancer/

REPLY
marcia | @marciak9 | Mar 7 9:40am

Biopsy yesterday on a node in my lungs. That hurt. Now waiting for results. I’m so impatient. I’m most likely restarting chemo again. She said a different cocktail this time. I’ve been out of treatment for 6 months.

REPLY
ncteacher | @ncteacher | Mar 6 12:32pm
In reply to @markymarkfl "I get chemo every other Friday, which lines up perfectly with my 9/80 work schedule (every..." + (show)
@markymarkfl

I get chemo every other Friday, which lines up perfectly with my 9/80 work schedule (every other Friday off) .

I started feeling sick (Covid) on my off Friday, tested positive the next day. Started the Paxlovid on Sunday, last dose on Thursday. They didn't think one day clearance was enough to avoid interaction with the chemo drugs, but were also going with the old/conservative 5-days-after-symptoms guideline before seeing me again.

I was actually happy to have the break, having gone 27 treatments in a row with no breaks or absences, since I had a short vacation scheduled the following weekend -- it left me with extra energy on the trip. Plus, re-synchronizing with my work schedule would have been a pain.

In hindsight, considering my first recurrence grew from nothing to 1.3 cm in less than 3 months without adjuvant chemo, it's no big surprise the original tumor and its metastatic children resumed growth so quickly after missing one treatment. I was hoping they could stay in their dormant state for that short of a period, but it was not to be. This thing is aggressive.

Now that I'm back on the full-strength chemo, we'll see if the tumors and CA19-9 respond as they did before, or if drug resistance is now in play. The scary part is that for the trial I'm hoping to get into, they require a 30-day washout period before beginning the new treatment, and we now know my cancer will take advantage of any break it can find. 🙁

If there's a bright side to it... it may be that I could possibly have been denied a chance to participate in the trial if my disease appeared stable on the GAC. These events may improve my chance of getting in. Fingers still crossed, and expecting more news next week.

Jump to this post

Wow. I went back to find your reference to the CA 19-9 jumping up after only one month off chemo. Sorry to hear that. I'm going to be one week off due to having had surgery Tuesday. Routine ureteral stent replacement, but we couldn't figure out a way to reschedule the surgery, so the chemo got shoved out a week. My last two CA 19-9s were in normal range, but trending upward, so my brain has been working overtime on the implications of that combined with the three-week gap between chemo cycles. I hate it. Bleah.

"...& then adventure began!" @199 , that cracked me up. Yep, we're all on an adventure for sure!

REPLY
markymarkfl | @markymarkfl | Mar 6 11:37am
In reply to @mnewland99 "Hi mm, I ask about paxlovid because you say it took 4 weeks before next treatment...." + (show)
@mnewland99

Hi mm,
I ask about paxlovid because you say it took 4 weeks before next treatment. I got covid in January and took paxlovid and was off chemo for the required 10 days even though I was well after about 5 days. However, I am currently on the 3:1 ratio of chemo (3 wks on and 1 wk off). I protested to come in after 5 days since at Hoag (I hadn’t made the change to chemo at UCLA yet) you have private rooms and I felt I wouldn’t be a threat to anyone else as far as covid being a contagious disease, but was denied. By my next treatment I was already accepted into the UCLA chemo. My long point is I know being off chemo especially since I’m at the very early stages of getting it and it hadn’t had time to build up in my body yet, that my cancer areas could grow. I thought maybe it took you 4 weeks because you were making a long recovery without paxlovid. I’m sure your numbers will go back down once you continue chemo.

Jump to this post

I get chemo every other Friday, which lines up perfectly with my 9/80 work schedule (every other Friday off) .

I started feeling sick (Covid) on my off Friday, tested positive the next day. Started the Paxlovid on Sunday, last dose on Thursday. They didn't think one day clearance was enough to avoid interaction with the chemo drugs, but were also going with the old/conservative 5-days-after-symptoms guideline before seeing me again.

I was actually happy to have the break, having gone 27 treatments in a row with no breaks or absences, since I had a short vacation scheduled the following weekend -- it left me with extra energy on the trip. Plus, re-synchronizing with my work schedule would have been a pain.

In hindsight, considering my first recurrence grew from nothing to 1.3 cm in less than 3 months without adjuvant chemo, it's no big surprise the original tumor and its metastatic children resumed growth so quickly after missing one treatment. I was hoping they could stay in their dormant state for that short of a period, but it was not to be. This thing is aggressive.

Now that I'm back on the full-strength chemo, we'll see if the tumors and CA19-9 respond as they did before, or if drug resistance is now in play. The scary part is that for the trial I'm hoping to get into, they require a 30-day washout period before beginning the new treatment, and we now know my cancer will take advantage of any break it can find. 🙁

If there's a bright side to it... it may be that I could possibly have been denied a chance to participate in the trial if my disease appeared stable on the GAC. These events may improve my chance of getting in. Fingers still crossed, and expecting more news next week.

REPLY
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