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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.

philv | @philv | Jan 8, 2023
In reply to @krfinlayson "I was diagnosed with stage 3 pancreatic cancer, with spread to 8 lymph nodes. I also..." + (show)
@krfinlayson

I was diagnosed with stage 3 pancreatic cancer, with spread to 8 lymph nodes. I also had Whipple surgery with msv reconstruction in Feb 2021. I started chemo (folfirinox for 6 months - 12 treatments, one every 2 weeks) from April-Sept 2021. After this, bloodwork and CT scans every 3 months. I am still here, with a few differences in my life - I have to take Creon (a digestive enzyme) when I snack or eat, require insulin to control my blood sugars and have some neuropathy, primarily in my hands and feet. I will admit none of this has been a piece of cake, but in my opinion is a small price to pay to still be here with my family. We lost my mother-in-law to pancreatic cancer in 2000 within 4 months of diagnosis, but she was not eligible for surgery and refused treatment. Needless to say, when I was diagnosed my family panicked. I think this has been tougher in my family because they can only watch and try to help. I felt like I was fighting the whole time I was going through surgery, recovery, and chemo. I had physical struggles then. The mental struggle became more real when that was all done - now what? Wait and see what each scan shows? Is the cancer back? Has it spread somewhere else? I had to work hard to turn the scans into a positive proactive thing - we will catch things early enough to resume treatment. I still get some anxiety between scan and results, but I try to only think positively. At this point, it has been 2 yrs since my diagnosis, I have regained about 15 pounds, generally feel ok, but my tumour markers have been climbing. Scans show nothing yet. Dr has been very cautious with any potential issue - I have had one biopsy (negative) and am scheduled for more testing this week. Hopefully it too is good. Your husband can handle whatever comes - he needs you to stay strong for him - try to think positive thoughts, be supportive, let him rest if he is tired, etc. You can do this! Best wishes to you both.

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Sort of in the same boat.
Diagnosed June 13th of 2022.
Had Whipple surgery Stage 3. Found six lymph nodes out of 56 cancerous. Had clear margins. My CA 19 is down to 105 from over 3,000.
Just finished 9 of 12 chemo treatments. Will have another CT scan in February.
Live in fear of tumor coming back or spread.

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1 reply
krfinlayson | @krfinlayson | Jan 8, 2023
In reply to @philv "Sort of in the same boat. Diagnosed June 13th of 2022. Had Whipple surgery Stage 3...." + (show)
@philv

Sort of in the same boat.
Diagnosed June 13th of 2022.
Had Whipple surgery Stage 3. Found six lymph nodes out of 56 cancerous. Had clear margins. My CA 19 is down to 105 from over 3,000.
Just finished 9 of 12 chemo treatments. Will have another CT scan in February.
Live in fear of tumor coming back or spread.

Jump to this post

Try not to let the fear control you. You can’t control what is going on in your body, but you can try to control how you handle things, your attitude, positivity etc. I have always been a realist so am well aware what the odds are, but I will do my best regardless. Try to focus on things you can control vs those you can’t. Wishing you all the best! You CAN do this!

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1 reply
philv | @philv | Jan 8, 2023
In reply to @krfinlayson "Try not to let the fear control you. You can’t control what is going on in..." + (show)
@krfinlayson

Try not to let the fear control you. You can’t control what is going on in your body, but you can try to control how you handle things, your attitude, positivity etc. I have always been a realist so am well aware what the odds are, but I will do my best regardless. Try to focus on things you can control vs those you can’t. Wishing you all the best! You CAN do this!

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Thank you
I will give it my best shot.

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isaall888 | @isaall888 | Jan 9, 2023

My sister is going through this mental struggle now that the physical struggle is slowly getting better. That is a hard one. Wondering did I go through this surgery, the diarrhea, nausea,the chemo just to find out on my next scan that it's back? Unfortunately I can only tell her to live in the moment. Not in the past or future. The power of the mind is incredible. Believe you are cured. And live life as much as possible. Easy for me to say so but it's true for any of us in this life. I am happy you are turning tour mind to positive thoughts and outcome. You made it through enjoy it. Bless you.

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thawk32 | @thawk32 | Jan 15, 2023

Hi,
I’m a 59 old male who was diagnosed with stage 4 Neuroendocrine/ acinar cancer in the Pancreas body along with small spots on my liver. I’m going on two years of chemo treatments. The cancer I have is rare and only consists in 1% of all pancreas cancers.
I have been of Chemo for almost two years and have tolerated the treatments very well. I’ve also had genetic testing done so I could provide with my family if this was hereditary so they could look out for this in their bodies. The good news was this wasn’t hereditary. I’ve been treated locally and have been to Dana Faber in Boston for a second opinion. Another good thing is my main lesion on the Pancreas has shrunk about 60% fro the original size and the small spot on liver also decreased.
I’m always wondering if there is any other treatments that I can do along with the chemo to shrink the cancer. Feel free to charm in or contact.

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drmak | @drmak | Jan 16, 2023

Hi I’m Yaya
My sister was diagnosed with pancreatic cancer and started chemotherapy now on 3rd treatment but she is struggling with getting back on her feet l. Very fragile and fatigued loss of appetite. Is there something we can do to help her. I hear some actual go to work a day after chemo but she is struggling please help

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2 replies
thawk32 | @thawk32 | Jan 16, 2023
In reply to @drmak "Hi I’m Yaya My sister was diagnosed with pancreatic cancer and started chemotherapy now on 3rd..." + (show)
@drmak

Hi I’m Yaya
My sister was diagnosed with pancreatic cancer and started chemotherapy now on 3rd treatment but she is struggling with getting back on her feet l. Very fragile and fatigued loss of appetite. Is there something we can do to help her. I hear some actual go to work a day after chemo but she is struggling please help

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Hi,
Everyone tolerates chemo different. I thank god I’m one of the lucky ones having done 38 treatments and feeling pretty good. If your sister isn’t eating much have her drink Ensure so her body gets what she needs. The hospital should have a social worker to get her samples and coupons to save money. Also have her talk to an nutritionist to help her figure out what to do. Sending prayers 🙏🏻🙏🏻🙏🏻

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1 reply
sprinter345 | @sprinter345 | Jan 17, 2023

Hi-
My husband struggled in his first few rounds but then they added a low dose of steroids and anti nausea drugs and it helped tremendously. Also, the medical marijuana - just two puffs- really helped his appetite.
I wish her well.

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1 reply
ken240 | @ken240 | Jan 17, 2023
In reply to @drmak "Hi I’m Yaya My sister was diagnosed with pancreatic cancer and started chemotherapy now on 3rd..." + (show)
@drmak

Hi I’m Yaya
My sister was diagnosed with pancreatic cancer and started chemotherapy now on 3rd treatment but she is struggling with getting back on her feet l. Very fragile and fatigued loss of appetite. Is there something we can do to help her. I hear some actual go to work a day after chemo but she is struggling please help

Jump to this post

Hi Yaya, as another commenter has said, everyone reacts differently to chemo. Fatigue is consistent, but
I usually feel a little better around the fifth day after Folferinox treatment. I always eat small portions several times a day, making sure to include protein-rich foods. Sometimes at the beginning of a new cycle, if I am still feeling sick from side effects, my doctor will agree for an extra week off to recover, and that has helped me tolerate the next cycle (I am up to number 9). Also, when I experienced some acute neuropathy, the dosage was reduced twice, and that has helped. I have found that when I tell the doctor the side effects I experience, there is usually some alternative to ease the severity. Best wishes.

REPLY
1 reply
drmak | @drmak | Jan 17, 2023
In reply to @ken240 "Hi Yaya, as another commenter has said, everyone reacts differently to chemo. Fatigue is consistent, but..." + (show)
@ken240

Hi Yaya, as another commenter has said, everyone reacts differently to chemo. Fatigue is consistent, but
I usually feel a little better around the fifth day after Folferinox treatment. I always eat small portions several times a day, making sure to include protein-rich foods. Sometimes at the beginning of a new cycle, if I am still feeling sick from side effects, my doctor will agree for an extra week off to recover, and that has helped me tolerate the next cycle (I am up to number 9). Also, when I experienced some acute neuropathy, the dosage was reduced twice, and that has helped. I have found that when I tell the doctor the side effects I experience, there is usually some alternative to ease the severity. Best wishes.

Jump to this post

Thank you @ken240 l am just so worried about her. I live in a different country and when I call and I’m told she is always sleeping it worries if she will one day get over the chemo effect and roll back to her normal life start going to work. Will try your trick to speak with the doc to re look at the dosages etc. Appreciated

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