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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.

waltsocal | @waltsocal | Jan 18, 2024

To marienewland:

Just to follow-up; I've been going to the Leonard Cancer Institute in Mission Viejo, CA.

My Whipple surgery was at the Providence Mission Hospital. Unfortunately, I had a nicked bowel and was at the hospital for 6 weeks with various infections. Someone suggested tis hospital instead of Hoag. However, like you, I missed my window to do the followup chemo and it also has messed up my "possibilities to be cancer free."

I was disappointed at the care from Providence hospital.
The Leonard Cancer Institute has been very helpful in my before and after care. I would recommend them. I'm almost at the point of clinical trials only. Current CT scan did not look too good. Waiting my CA19 results now.

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Moderator
Colleen Young, Connect Director | @colleenyoung | Jan 16, 2024
In reply to @randyokey "Hi, my husband was diagnosed with stage 4 pancreatic cancer on December 18,2023. He also has..." + (show)
@randyokey

Hi, my husband was diagnosed with stage 4 pancreatic cancer on December 18,2023. He also has lesions on his liver. He is unable to eat much. I would like to know what I can prepare for him with a lot of protein. He has lost about 50 pounds in the last 3 months. He seems to be in a lot of pain after he eats. His chemo starts next Monday, January 15th, 2024. Are there any hints or suggestions out there from personal experience that will help him? Thank you.

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Hi @randyokey, there are several discussions about eating with pancreatic cancer. Here are a few you might find helpful:
- What to eat when diagnosed with pancreatic cancer?
https://connect.mayoclinic.org/discussion/what-to-eat-2/
- Husband won’t eat
https://connect.mayoclinic.org/discussion/husband-wont-eat/
- Still losing weight: Does timing of Creon help?
https://connect.mayoclinic.org/discussion/still-losing-weight/
How did the first chemo treatment go?

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ruthie67 | @ruthie67 | Jan 16, 2024
In reply to @katiegrace "Julie, My tumor is in the head of the pancreas. I also had intense jaw pain..." + (show)
@katiegrace

Julie,
My tumor is in the head of the pancreas. I also had intense jaw pain like you described. During my 2nd chemo infusion, I had cramping in my hands and cramping in my cheek muscles (was hard to form words when talking). From the beginning of my Folfirinox chemo treatments, my oncologist reduced my oxaliplatin to 50% because of it. At my 8th chemo, I just didn't feel like I could continue the oxaliplatin because of the increasing jaw pain, and increasing neuropathy in my feet, so I did the Folfirinox without the oxaliplatin. For my 9th chemo, they switched my chemo plan to gemzar/Abraxane. (They didn't want to continue giving me the Folfirinox without the oxaliplatin) The side effects of the gemzar/Abraxane have been much less for me-I don't know if it was the right decision to stop the oxaliplatin, but it was a decision I felt I needed to make at the time. My C19 has continued to go down with the Gemzar/Abraxane. I have one more treatment, before surgery. (12 total treatments). I am very nervous about surgery. My 12th chemo is Jan 18th. I will have CT and PET scan on Jan 30, 31.
Wishing you the best.

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Praying for good results

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mayoconnectuser1 | @mayoconnectuser1 | Jan 16, 2024

nbreeze,

I am not a medical professional.

I recommend, as I always do, that you should immediately work with Mayo Rochester to be admitted. Further, and especially given your circumstances, you should relocate to Rochester - and, remain throughout chemo, surgery, recovery, and post surgery chemo. IMO, this care is not available at Moffitt.

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Mentor
Teresa, Volunteer Mentor | @hopeful33250 | Jan 16, 2024
In reply to @nbreeze "I really had no symptoms. My internist ordered an MRI because I have a history of..." + (show)
@nbreeze

I really had no symptoms. My internist ordered an MRI because I have a history of IBS, diverticulitis, etc.

I feel absolutely fine beyond the stress. No symptoms. I lost my Mom a week ago who was a cancer survivor to age 93. I’m a fighter.

I appreciate this. I have no family locally so I am basically alone physically but have good emotional support.

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Many of our members think of Mayo Connect as part of their family, @nbreeze, so please feel free to share your concerns and your questions with this online community. We are here for you, and we will encourage and support you along this journey. If you are looking for a second opinion at a Mayo facility (there is one in Florida), here is a link to appointment information, http://mayocl.in/1mtmR63.

I am glad to hear that you are feeling well and that as you say, "I'm a fighter." A fighting spirit can help with any cancer diagnosis. I would encourage you to read the recently published Spotlight of one of our members, @stageivsurvivor https://connect.mayoclinic.org/blog/about-connect/newsfeed-post/clinical-researcher-turns-patient-advocate-meet-stageivsurvivor/.

When is your next appointment or consultation?

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marcia | @marciak9 | Jan 15, 2024
In reply to @colleenyoung "@bceg1969, I think you may be referring to Dr. Truty, pancreatic cancer surgeon at Mayo Clinic...." + (show)
@colleenyoung

@bceg1969, I think you may be referring to Dr. Truty, pancreatic cancer surgeon at Mayo Clinic. I'm tagging a few members who have consulted and been treated by Dr. Truty to share with you, like @marciak9 @dubbscopper @momof3gals @ellengalloup @ashley2235 @susan2018

You may appreciate this video

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Hello
I have a tumor that is wrapped around the arteries. Dr Truty at Mayo in Rochester would have done the surgery but I decided not to go ahead with it. At 61 I want to enjoy what time is left for me. To have my pancreas, spleen, and stomach removed would have been too hard on me. I would have been too weak for more chemo if it recurs and it will. I would have constant diarrhea and painful cramps. Not everyone is eligible for the surgery so it’s not a guarantee but worth talking to Dr Truty. He is amazing!

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nbreeze | @nbreeze | Jan 15, 2024
In reply to @hopeful33250 "Hello @nbreeze and welcome to Mayo Connect. If you look at the video in the post..." + (show)
@hopeful33250

Hello @nbreeze and welcome to Mayo Connect. If you look at the video in the post above, you will get some good information for how Pancreatic Cancer is treated at Mayo Clinic. Here are some Connect members who were treated at Mayo Clinic, by Dr. Truty, @marciak9 @dubbscopper @momof3gals @ellengalloup @ashley2235 @susan2018

You mentioned that you were just recently diagnosed, @nbreeze. What symptoms were you having that led to the diagnosis? How are you feeling now?

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I really had no symptoms. My internist ordered an MRI because I have a history of IBS, diverticulitis, etc.

I feel absolutely fine beyond the stress. No symptoms. I lost my Mom a week ago who was a cancer survivor to age 93. I’m a fighter.

I appreciate this. I have no family locally so I am basically alone physically but have good emotional support.

REPLY
1 reply
Mentor
Teresa, Volunteer Mentor | @hopeful33250 | Jan 15, 2024
In reply to @nbreeze "I have just been diagnosed with Pancreatic cancer. I have an appointment scheduled at Moffitt but..." + (show)
@nbreeze

I have just been diagnosed with Pancreatic cancer. I have an appointment scheduled at Moffitt but would like to hear about your experience at Mayo. My husband was treated in MN about 15 years ago and though there was nothing to be done for him it was an excellent experience. I live in Naples, Fl.

Jump to this post

Hello @nbreeze and welcome to Mayo Connect. If you look at the video in the post above, you will get some good information for how Pancreatic Cancer is treated at Mayo Clinic. Here are some Connect members who were treated at Mayo Clinic, by Dr. Truty, @marciak9 @dubbscopper @momof3gals @ellengalloup @ashley2235 @susan2018

You mentioned that you were just recently diagnosed, @nbreeze. What symptoms were you having that led to the diagnosis? How are you feeling now?

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1 reply
nbreeze | @nbreeze | Jan 15, 2024

I have just been diagnosed with Pancreatic cancer. I have an appointment scheduled at Moffitt but would like to hear about your experience at Mayo. My husband was treated in MN about 15 years ago and though there was nothing to be done for him it was an excellent experience. I live in Naples, Fl.

REPLY
1 reply
Moderator
Colleen Young, Connect Director | @colleenyoung | Jan 15, 2024
In reply to @bceg1969 "My husband has pancreatic cancer, diagnosed last April. Has been going through treatment, chemo and radiation,..." + (show)
@bceg1969

My husband has pancreatic cancer, diagnosed last April. Has been going through treatment, chemo and radiation, the tumor shrunk a little but is surrounded by the artery and vein and the surgeon said he can't operate. I saw there is a dr at Mayo Clinic that operates on case like this. I hope to get in touch with him. We live in Boston but we would travel there

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@bceg1969, I think you may be referring to Dr. Truty, pancreatic cancer surgeon at Mayo Clinic. I'm tagging a few members who have consulted and been treated by Dr. Truty to share with you, like @marciak9 @dubbscopper @momof3gals @ellengalloup @ashley2235 @susan2018

You may appreciate this video

REPLY
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