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.

gracect | @gracect | Jan 22 6:14am
In reply to @sheridanb "My husband was on folfirinox first... every other week with pump for 6 months. Then reduced..." + (show)
@sheridanb

My husband was on folfirinox first... every other week with pump for 6 months. Then reduced to a maintenance dose for a few months. But, CA19-9 started to go up, and new spots seen in the scans. Switched to G/A a few months ago... once/week for 3 weeks then one week off. Not as harsh for him as the folfirinox but still often could also be described like markymark as a fatigue ridden couch potato. He's at the end of his week off right now and has a little more energy.
He lost weight on folfirinox... those last few months of it were really rough on him. Regained the weight when on the maintenance dose. Now has put on more weight... I guess from me bugging him to eat, plus he's just not burning any calories when couch surfing.
Latest CA19-9 numbers down in the 300s which sounds high unless you compare them to the 39,000 + of 15 months ago. I'm hoping if numbers continue to come down, and scans look good that he can get to an every other week treatment schedule so he can regain something a little more similar to how he used to live. I don't think he will get back to backpacking and whitewater kayaking... but maybe some short skis or short hikes or kayaking on a lake would be nice. I'm dreaming at this point.... just hoping he can do something outdoors again at some point as it has been a frustrating journey for him. He walked the mile to get the mail with me today and that is something! He was a strong, healthy, very active 69 year old when this was diagnosed and I think that helped with the battles he's endured so far.

Jump to this post

I do hope he gets on every two weeks. It is just so much better in our case to have more energy days. God Bless and fingers crossed for good scans and numbers!

REPLY
2 replies
markymarkfl | @markymarkfl | Jan 22 10:44am

Minor correction to my previous post (3 up from this one):

It's the Bristol Meyers Squibb (BMS) patient financial assistance program for Abraxane. AbbVie is for Creon.

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Moderator
Colleen Young, Connect Director | @colleenyoung | Jan 31 8:51pm
In reply to @birgittehass "Briefly, I have been through the following: - Jul. 23, failed Whipples operation - Aug. 2023..." + (show)
@birgittehass

Briefly, I have been through the following:
- Jul. 23, failed Whipples operation
- Aug. 2023 – Jan. 2024, 13 treatments with Folfirinox (100%)
- Feb. 2024, successful Whipples operation
- Mar. – Jun. 2024, 6 treatments with Folfirinox (75%)
- nov. 2024 latest CT scan, no visible metastases, and CA-19 remains within the normal range

Unfortunately, the pathology report after the 2nd Whipples operation showed that there was a lymph metastasis and spread along nerve pathways.

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@birgittehass, I'm glad to hear that the latest CT scan showed no sign of visible metastases. However, you mention that the post surgical pathology report indicated that there was spread to the lymph node(s). Are you currently on treatment? How are you doing?

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kakalena | @kakalena | Feb 1 12:07pm

Hi, I'm Kathryn. I am 77 years old. I have recently been diagnosed with acinar cell carcinoma of the pancreas. They found this in a CT scan in October, 2024 when doing my quarterly scan for my stage 4 lung cancer (non small cell adenocarcinoma) for which I have been receiving immunotherapy (Yervoy, Opdivo) for the past 24 months. The lung cancer is in remission except for some swollen lymph nodes, some of which have now been identified as a pancreatic mass. After a biopsy in December, the tumor is about 4 cm. It is on the head of the pancreas and is possibly going to be removed with the Whipple method. I will be starting on a neoadjuvant therapy of abraxane and gemcitabine in March. I'm trying to keep a lot of plates spinning.

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gisele1976 | @gisele1976 | Feb 1 1:18pm
In reply to @gracect "I do hope he gets on every two weeks. It is just so much better in..." + (show)
@gracect

I do hope he gets on every two weeks. It is just so much better in our case to have more energy days. God Bless and fingers crossed for good scans and numbers!

Jump to this post

My husband's CT scan showed no change. He will have low dose chemo every two weeks. Good luck!

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gracect | @gracect | Feb 1 3:50pm

Great- hope it improves his quality of life !

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siosal | @siosal | Feb 1 7:28pm

Anyone familiar with intraductal papillary mucinous cyst of pancreatic tail?
I just got diagnosed and will meet the surgeon in 10 days.
What are good questions to ask?
Can anyone share their experience?
Thank you.

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joiedevivre | @joiedevivre | Feb 1 8:48pm
In reply to @sheridanb "My husband was on folfirinox first... every other week with pump for 6 months. Then reduced..." + (show)
@sheridanb

My husband was on folfirinox first... every other week with pump for 6 months. Then reduced to a maintenance dose for a few months. But, CA19-9 started to go up, and new spots seen in the scans. Switched to G/A a few months ago... once/week for 3 weeks then one week off. Not as harsh for him as the folfirinox but still often could also be described like markymark as a fatigue ridden couch potato. He's at the end of his week off right now and has a little more energy.
He lost weight on folfirinox... those last few months of it were really rough on him. Regained the weight when on the maintenance dose. Now has put on more weight... I guess from me bugging him to eat, plus he's just not burning any calories when couch surfing.
Latest CA19-9 numbers down in the 300s which sounds high unless you compare them to the 39,000 + of 15 months ago. I'm hoping if numbers continue to come down, and scans look good that he can get to an every other week treatment schedule so he can regain something a little more similar to how he used to live. I don't think he will get back to backpacking and whitewater kayaking... but maybe some short skis or short hikes or kayaking on a lake would be nice. I'm dreaming at this point.... just hoping he can do something outdoors again at some point as it has been a frustrating journey for him. He walked the mile to get the mail with me today and that is something! He was a strong, healthy, very active 69 year old when this was diagnosed and I think that helped with the battles he's endured so far.

Jump to this post

Folfirinox was really tough on my husband - fatigue, significant weight loss and generally no energy for anything. He only did it for 3 sessions (once a fortnight) and I take my hat off to your husband for doing it for 6 months! My husband could not walk 100 yards much less the mile your husband did! Because CA19-9 numbers did not come down, oncologist switched my husband to Gem-Abraxane quite quickly. Side effects much more tolerable. First it was 3 weeks on and 1 week off, then it became fortnightly with the occasional 3-weekly to allow us to travel. Hoping that it will be the same for your husband. If your husband responds well, you may not be dreaming of walks. By the 6th month of Gem-Abraxane, my husband and I were doing daily walks of just under a mile. Caregiver's job is to do the nagging, the prodding, the encouraging, and the being hopeful.

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1 reply
sheridanb | @sheridanb | Feb 1 9:47pm
In reply to @joiedevivre "Folfirinox was really tough on my husband - fatigue, significant weight loss and generally no energy..." + (show)
@joiedevivre

Folfirinox was really tough on my husband - fatigue, significant weight loss and generally no energy for anything. He only did it for 3 sessions (once a fortnight) and I take my hat off to your husband for doing it for 6 months! My husband could not walk 100 yards much less the mile your husband did! Because CA19-9 numbers did not come down, oncologist switched my husband to Gem-Abraxane quite quickly. Side effects much more tolerable. First it was 3 weeks on and 1 week off, then it became fortnightly with the occasional 3-weekly to allow us to travel. Hoping that it will be the same for your husband. If your husband responds well, you may not be dreaming of walks. By the 6th month of Gem-Abraxane, my husband and I were doing daily walks of just under a mile. Caregiver's job is to do the nagging, the prodding, the encouraging, and the being hopeful.

Jump to this post

My husband's CA19-9 numbers came down dramatically during those 6 months which is why he kept at the folfirinox. The doctor gave him the choice to stop as it really was terrible for him (and for me). He definitely could not walk a mile when on folfirinox. The G/A so far is definitely easier to tolerate, though still on the couch most of the time. But, he's back to noticing what is going on around him which is nice. Just pointed out the crescent moon and venus hanging in the sky. Nice to be able to converse again. Yes, I am hopeful. Just didn't think we would be in this medical position for another 10 or 20 years... I just lost my mom at 100 years of age, and we've always been so healthy that I assumed we had decades left for kayaking and hiking. You just never know...

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1 reply
joiedevivre | @joiedevivre | Feb 2 1:11am
In reply to @sheridanb "My husband's CA19-9 numbers came down dramatically during those 6 months which is why he kept..." + (show)
@sheridanb

My husband's CA19-9 numbers came down dramatically during those 6 months which is why he kept at the folfirinox. The doctor gave him the choice to stop as it really was terrible for him (and for me). He definitely could not walk a mile when on folfirinox. The G/A so far is definitely easier to tolerate, though still on the couch most of the time. But, he's back to noticing what is going on around him which is nice. Just pointed out the crescent moon and venus hanging in the sky. Nice to be able to converse again. Yes, I am hopeful. Just didn't think we would be in this medical position for another 10 or 20 years... I just lost my mom at 100 years of age, and we've always been so healthy that I assumed we had decades left for kayaking and hiking. You just never know...

Jump to this post

Let us both be hopeful! The fact that your husband started noticing things is a sign! When my husband noticed something I wore a couple of months back, I could have sat down and cried buckets! I know exactly what you mean about the "medical position" - cancer was not in our families; my father-in-law passed at 99 a couple of years back, my mother is 92. But if Gem-Abraxane keeps them both alive with hopes that the side effects get more and more tolerable, we can both live with the long-term chemotherapy! And pray for a cure. If you have read the posts by @stageivsurvivor, Folfirinox was not even approved just over a decade ago and I believe Gem-Abraxane is a recent thing as well.

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