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.

julieacklin | @julieacklin | Jan 15 10:31am
In reply to @patti303 "Hi, Julie: This comment woke me up: "My cheeks have a sensation that feels like I’ve..." + (show)
@patti303

Hi, Julie:
This comment woke me up: "My cheeks have a sensation that feels like I’ve had dental work/novacain that comes and goes. Anyone else get that?"

Tell your team!

I also had oxaliplatin with my chemo and some people (as I understand it - I am NOT a medical pro), depending on dosage amounts, will have greater susceptibility to neuropathy. Everyone reacts differently. Starting with my 7th infusion I began to feel some mouth and tongue numbness in addition to the neuropathy in my feet and hands. I forgot to mention it to my PA prior to my 8th infusion (brain fog). Shortly after my 8th infusion I answered a phone call from a friend and found I was not able to speak clearly. I simply couldn't get my tongue to work. Again, I completely forgot about it as the worst of the symptoms would subside a bit after about 10 days. When speaking with my PA prior to my 9th infusion, I apologized for not speaking as clearly as I should. They promptly stopped that drug as part of "my" treatment. I'm not saying they will do that for you, again, "everyone" is different and I have no idea if what you are getting is what I received. But every one needs to track and note any and all symptoms, reactions to their therapy and inform their team.

What I have learned: With any odd, strange, uncomfortable symptom I had to WRITE IT DOWN! I had to tape those notes to the back of my phone! Seriously. It's really important to clearly let them know how you are responding. I should had done that when I started therapy. Also, regarding neuropathy, check to see how your feet are doing beyond just walking around. Flex your feet in all directions to see if the neuropathy is affecting any lower leg muscles. Sometimes just walking around doesn't tell the entire story and your team needs to know how "your" body is responding.

Wishing you the best with your treatment. At times it seems there's just too much to deal with, but somehow we do just that.

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Thank you for the advice to tell my team about my cheeks- plus neuropathy. The numbness in my face does give me an uneasy feeling, worry that it will get worse and I can’t stop it. If it was in my tongue and affecting my speaking, I would probably panic! Thank you for this good advice.

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jewelziet | @jewelziet | Jan 15 11:18am
In reply to @bceg1969 "Thank you I didn't know about the surgeons in NY They are much closer to where..." + (show)
@bceg1969

Thank you
I didn't know about the surgeons in NY
They are much closer to where we live
The surgeon,Dr Clancy at Brigham & Women's said he would not operate because of the vascular involvement
I wonder how to get in touch with the 2 surgeons in NY.Maybe I'll try their website and thank you so much for this information

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I had stage 3 pancreatic cancer with a 4mm tumor originally wrapped around my portal vein. My oncologist, Dr. Margaret Tempero of UCSF started the pancreatic cancer treatment program at UCSF. She recommended my surgical oncologist to me. Four months ago, Dr. Carlos Corvera performed the Whipple on me. He usually does two Whipples a day, but mine required the entire day and he pulled in a transplant specialist to assist. Dr. Corvera imdoes surgery at UCSF Parnassus campus. The nurses who cared for me afterwards were phenomenal. I had a complicated recovery and was in hospital for 17 days. Not the typical recovery window I’m told.

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1 reply
Moderator
Colleen Young, Connect Director | @colleenyoung | Jan 15 11:32am

Many of you have crossed virtual paths with @stageIVsurvivor here in the halls of the pancreatic cancer support group on Mayo Clinic Connect. @hopeful33250 interviewed him for today's featured member spotlight. Learn more about stageivsurvivor and his love of all things Swiss, as well as why advocating for pancreatic cancer patients is important to him.

- Clinical researcher turns patient advocate: Meet @stageivsurvivor https://connect.mayoclinic.org/blog/about-connect/newsfeed-post/clinical-researcher-turns-patient-advocate-meet-stageivsurvivor/

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Moderator
Colleen Young, Connect Director | @colleenyoung | Jan 15 2:42pm
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
https://youtu.be/AI6rutMIxV8

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nbreeze | @nbreeze | Jan 15 5:12pm

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.

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Mentor
Teresa, Volunteer Mentor | @hopeful33250 | Jan 15 6:02pm
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.

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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 6:35pm
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.

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1 reply
marcia | @marciak9 | Jan 15 7:40pm
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
https://youtu.be/AI6rutMIxV8

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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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Mentor
Teresa, Volunteer Mentor | @hopeful33250 | Jan 16 7:10am
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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mayoconnectuser1 | @mayoconnectuser1 | Jan 16 9:17am

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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