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.

mayojoe7 | @mayojoe7 | Apr 7, 2020
In reply to @jeanne5009 "Very best of luck to you. My friend is scheduled to have the Whipple procedure done..." + (show)
@jeanne5009

Very best of luck to you. My friend is scheduled to have the Whipple procedure done very soon. He has a fast growing cyst on the head of the pancreas with inflammation. Hopefully that is as far as it will go. I will be posting as we proceed and will be watching your progress with Mayo.

Jump to this post

Thank you-we are ready to get started. I hope all goes well with your friend's Whipple procedure. Blessings to you.

REPLY
kjrita | @kjrita | Apr 6, 2020
In reply to @mayojoe7 "Hello, I just joined this forum. I was diagnosed with Pancreatic Cancer by Mayo on Mar..." + (show)
@mayojoe7

Hello, I just joined this forum. I was diagnosed with Pancreatic Cancer by Mayo on Mar 31st last week following Endoscopic US, then had CT this past Friday. Report shows there are metastatic lesions on my liver, spleen, duodenum and pancreatic head. We believe we will be told it is stage 4 since it has metastasized to the liver. I am no stranger to cancer, had Hodgkin's stage 3b with chemo and radiation in 1993 while in college. The treatment cured me and I have been able to live a blessed and wonderful life. Unfortunately, the radiation that saved my life due to Hodgkin's created new challenges down the road. In 2016, due to tissue deterioration caused by the radiation, I had my Mitral and Aortic valves replaced at Mayo Clinic Rochester. During that time Mayo also discovered a mass on my left Adrenal gland called a Pheochromocytoma. Apparently very rare condition and can be very dangerous. Had the Pheo removed in Jan 2016, then the valve replacement surgery in March 2016. I've been doing great following those surgeries until now with the Pancreatic Cancer diagnosis. I'm 48 years old and my family and I are ready to fight this with everything we have. I am so thankful for Mayo and have seen 1st hand what they can do. We're anxious to learn our treatment path. I've done some initial reading and we are hopeful I can become a surgical candidate eventually with Dr. Truty or one of the other surgeons at Mayo for the Whipple procedure. I will try to revisit once we learn more about our treatment path. God Bless you all, Joe

Jump to this post

@mayojoe7 It sounds like you are a very strong person indeed. I was diagnosed with pancreatic cancer 3/1/18. I went for a second opinion at Mayo and ended up working with Dr. Truty. The Mayo teams are the best! I pray that God will direct your path to the correct doctor and course of action. You know about one day at a time and I believe you know exactly what to do. I pray for peace and protection for you. If you need some encouragement, my story is out there for that purpose. 🙌🏻 Rita https://sharing.mayoclinic.org/2020/02/05/aggressive-approach-to-pancreatic-cancer-yields-outstanding-outcome/

REPLY
1 reply
Moderator
Colleen Young, Connect Director | @colleenyoung | Apr 6, 2020
In reply to @mayojoe7 "Hello, I just joined this forum. I was diagnosed with Pancreatic Cancer by Mayo on Mar..." + (show)
@mayojoe7

Hello, I just joined this forum. I was diagnosed with Pancreatic Cancer by Mayo on Mar 31st last week following Endoscopic US, then had CT this past Friday. Report shows there are metastatic lesions on my liver, spleen, duodenum and pancreatic head. We believe we will be told it is stage 4 since it has metastasized to the liver. I am no stranger to cancer, had Hodgkin's stage 3b with chemo and radiation in 1993 while in college. The treatment cured me and I have been able to live a blessed and wonderful life. Unfortunately, the radiation that saved my life due to Hodgkin's created new challenges down the road. In 2016, due to tissue deterioration caused by the radiation, I had my Mitral and Aortic valves replaced at Mayo Clinic Rochester. During that time Mayo also discovered a mass on my left Adrenal gland called a Pheochromocytoma. Apparently very rare condition and can be very dangerous. Had the Pheo removed in Jan 2016, then the valve replacement surgery in March 2016. I've been doing great following those surgeries until now with the Pancreatic Cancer diagnosis. I'm 48 years old and my family and I are ready to fight this with everything we have. I am so thankful for Mayo and have seen 1st hand what they can do. We're anxious to learn our treatment path. I've done some initial reading and we are hopeful I can become a surgical candidate eventually with Dr. Truty or one of the other surgeons at Mayo for the Whipple procedure. I will try to revisit once we learn more about our treatment path. God Bless you all, Joe

Jump to this post

I add my welcome, @mayojoe7. You certainly are no stranger to cancer. When is your next consult to find out the treatment plan for pancreatic cancer?

REPLY
1 reply
jeanne5009 | @jeanne5009 | Apr 6, 2020
In reply to @mayojoe7 "Hello, I just joined this forum. I was diagnosed with Pancreatic Cancer by Mayo on Mar..." + (show)
@mayojoe7

Hello, I just joined this forum. I was diagnosed with Pancreatic Cancer by Mayo on Mar 31st last week following Endoscopic US, then had CT this past Friday. Report shows there are metastatic lesions on my liver, spleen, duodenum and pancreatic head. We believe we will be told it is stage 4 since it has metastasized to the liver. I am no stranger to cancer, had Hodgkin's stage 3b with chemo and radiation in 1993 while in college. The treatment cured me and I have been able to live a blessed and wonderful life. Unfortunately, the radiation that saved my life due to Hodgkin's created new challenges down the road. In 2016, due to tissue deterioration caused by the radiation, I had my Mitral and Aortic valves replaced at Mayo Clinic Rochester. During that time Mayo also discovered a mass on my left Adrenal gland called a Pheochromocytoma. Apparently very rare condition and can be very dangerous. Had the Pheo removed in Jan 2016, then the valve replacement surgery in March 2016. I've been doing great following those surgeries until now with the Pancreatic Cancer diagnosis. I'm 48 years old and my family and I are ready to fight this with everything we have. I am so thankful for Mayo and have seen 1st hand what they can do. We're anxious to learn our treatment path. I've done some initial reading and we are hopeful I can become a surgical candidate eventually with Dr. Truty or one of the other surgeons at Mayo for the Whipple procedure. I will try to revisit once we learn more about our treatment path. God Bless you all, Joe

Jump to this post

Very best of luck to you. My friend is scheduled to have the Whipple procedure done very soon. He has a fast growing cyst on the head of the pancreas with inflammation. Hopefully that is as far as it will go. I will be posting as we proceed and will be watching your progress with Mayo.

REPLY
1 reply
mayojoe7 | @mayojoe7 | Apr 6, 2020

Hello, I just joined this forum. I was diagnosed with Pancreatic Cancer by Mayo on Mar 31st last week following Endoscopic US, then had CT this past Friday. Report shows there are metastatic lesions on my liver, spleen, duodenum and pancreatic head. We believe we will be told it is stage 4 since it has metastasized to the liver. I am no stranger to cancer, had Hodgkin's stage 3b with chemo and radiation in 1993 while in college. The treatment cured me and I have been able to live a blessed and wonderful life. Unfortunately, the radiation that saved my life due to Hodgkin's created new challenges down the road. In 2016, due to tissue deterioration caused by the radiation, I had my Mitral and Aortic valves replaced at Mayo Clinic Rochester. During that time Mayo also discovered a mass on my left Adrenal gland called a Pheochromocytoma. Apparently very rare condition and can be very dangerous. Had the Pheo removed in Jan 2016, then the valve replacement surgery in March 2016. I've been doing great following those surgeries until now with the Pancreatic Cancer diagnosis. I'm 48 years old and my family and I are ready to fight this with everything we have. I am so thankful for Mayo and have seen 1st hand what they can do. We're anxious to learn our treatment path. I've done some initial reading and we are hopeful I can become a surgical candidate eventually with Dr. Truty or one of the other surgeons at Mayo for the Whipple procedure. I will try to revisit once we learn more about our treatment path. God Bless you all, Joe

REPLY
3 replies
Moderator
Colleen Young, Connect Director | @colleenyoung | Apr 2, 2020
In reply to @kayh304 "Hello. I’m Kay. My husband John was diagnosed 30 months ago had Whipple 26 months ago...." + (show)
@kayh304

Hello. I’m Kay. My husband John was diagnosed 30 months ago had Whipple 26 months ago.
We were informed this week the cancer has returned to liver pancreas and abdominal wall.
We were offer more treatment other than pain meds.
Devestated.

Jump to this post

Hi @kayh304 I agree with @lml, there are many members here that know what you're going through. It's hard to hear when the cancer returns. Did you mean to say that other than pain meds, no other treatment is being considered at this time? Did you talk to the team about palliative or hospice care?

REPLY
lml | @lml | Apr 2, 2020

I am so very sorry. Welcome to the group. People here won’t have to imagine what you are going through. They know. Two years is not a very long time.

REPLY
kayh304 | @kayh304 | Apr 2, 2020

Hello. I’m Kay. My husband John was diagnosed 30 months ago had Whipple 26 months ago.
We were informed this week the cancer has returned to liver pancreas and abdominal wall.
We were offer more treatment other than pain meds.
Devestated.

REPLY
1 reply
thally5299 | @thally5299 | Mar 30, 2020
In reply to @baileycody "We've made the decision not to have the procedure done tomorrow. With COVID-19 we believe the..." + (show)
@baileycody

We've made the decision not to have the procedure done tomorrow. With COVID-19 we believe the risks outweigh any benefits and they can do the radiation with out the beads.
The radiation he will be receiving will be 5 days, either a monday -friday or Wednesday, Thurs, Fri, 2 days off then finish up on Monday and Tuesday. The actual radiation session is 1/2 hour. Its a one time thing - 5 days and thats it. Is your mom's radiation similar?

Jump to this post

Yes, that’s exactly what my mom is doing. She just has 2 more treatments left and goes back to chemo next Monday. She’s had no side effects...thank God. If you have any questions don’t hesitate to ask me 😊

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marvinjsturing | @marvinjsturing | Mar 30, 2020

@survivor2 @sunshine041594 @baileycody @thally5299 I have several posts in this thread. Things have changed significantly since my first post. I was diagnosed with pancreatic cancer in May of 2014. My Whipple was done in June of 2014. Following surgery, I had 6 months of chemo - 3 weeks on and 1 week off. Two weeks after my chemo, I spent a week in my local hospital. I was sent home, but a week later, I was in the hospital again. This time my doctor sent me to Mayo where I spent another week in the hospital. It was determined that because of a rare reaction to my chemo, I developed atypical Hemolytic Uremic Syndrome. I spent most of 2015 going to Mayo to be treated for aHUS. By the time, that was under control my kidney function was down to about 15%. In June of 2019, I had my 5 year PET scan. Once again, there was no evidence of disease and Mayo told me I didn't need to come back. Last December we moved and I had to find new doctors. My new oncologist wanted a PET scan done. Two doctors looked at my scan. One said it was inconclusive. The second doctor said it looked like cancer. I went to Mayo for a second opinion. They did a PET/MRI and a biopsy. It was determined that my cancer had come back on what was left of my pancreas. Because of artery involvement, surgery is not an option. Because of my kidney problems, I can't have chemo. This morning, I had my 8th radiation treatment. I am scheduled for a total of 25 treatments - 5 treatments a week. After my radiation is done, I have to wait 3 months. Then I can go back to Mayo to see if I can have surgery to remove the rest of my pancreas.

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