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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.

patti303 | @patti303 | Jan 14 9:08pm
In reply to @julieacklin "Good news! The tumor shrunk from 9 cm to 6.4cm. and also shrinkage in the 3..." + (show)
@julieacklin

Good news! The tumor shrunk from 9 cm to 6.4cm. and also shrinkage in the 3 lymph nodes. The doctor was encouraged and we were thrilled. I just finished 5th treatment- oxaliplatin, irinotecan and 5FU. My doc does not prescribe Leucavorin. I have had very little nausea and have a good appetite. My main side effect is the cold sensation with my hands and neuropathy. I have some tingling in my feet. I do have some intense jaw pain when I take a first bite that fades as I finish chewing. This is manageable pain at this point. My cheeks have a sensation that feels like I’ve had dental work/novacain that comes and goes. Anyone else get that?
The plan now is retest in 2 months, after 4 more treatments, and if still shrinking, switch to a chemo pill, Mon thru Friday. Has anyone else had this similar plan of treatment?

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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.

REPLY
1 reply
waltsocal | @waltsocal | Jan 14 6:34pm
In reply to @mnewland99 "Hello there, My heart goes out to you as you've really had it rough! May I..." + (show)
@mnewland99

Hello there,
My heart goes out to you as you've really had it rough! May I ask which medical group or hospital you were treated at? I live in Orange County, California and was treated at Hoag - not a Center of Excellence and I believe they really messed up my possibilities to be "cancer free" for at least a year or two instead of 4.5 months. Waiting is difficult, and we never know the consequences because there are different versions of the pancreatic mutation; there is a chance it could come back but for how long, no one knows. There are survivors so I hope you are one of the lucky ones! Be your best advocate and read as much as you can about the disease - this site is a very good source of information. I lost 50 lbs in the process, but I did gain 25 back and I'm thankful because it will help me fare well over the next few months. I think everyone should be prepared as far as wills, living trusts, etc. I'm actually in the process of selling my home so that I can ensure and see my children get to enjoy at least some of the money! My advice, be vigilant about your health, knowledegable about the disease, participate in these discussions as we all know exactly what you are going through, and how you feel, and enjoy life to the fullest!

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Sorry, just saw this.

I went to the National Cancer Center in Mission Viejo for my surgeon and oncologist.

Surgery was performed at Providence Hospital in Mission Viejo.

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gardenlady1116 | @gardenlady1116 | Jan 14 4:24pm
In reply to @markymarkfl "@bceg1969 , I don't know whether to be honored or embarrassed! ;) lol... I don't know..." + (show)
@markymarkfl

@bceg1969 , I don't know whether to be honored or embarrassed! 😉 lol...

I don't know much about involvement with the mesenteric artery, since my Whipple was a good bit simpler.

Three huge names in the complicated surgery biz are Mark Truty at Mayo in MN, Christopher Wolfgang at NY Langone, and Matthew Katz at MD Anderson.

Plenty of other really good ones around, but you want someone at a pancreatic center of excellence to get the complete, specialized care team on your case for experienced recovery care in the hospital after surgery.

Lots of records and studies show how much better the outcomes are at high-volume centers. Counselors at pancan.org can help you find out how many Whipples a particular center or surgeon does per year. If a procedure other than Whipple is required, their number of Whipples __might__ still be a proxy reflective of related experience, but it would be ideal to find out how much experience they have with the procedure you'd actually be getting.

Wishing you both the best!

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Couldn't agree more with you. Keep in mind that pancreatic cancer care is a "package deal", all areas of expertise may be needed in your care since very few cancers are cured with surgery alone.

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julieacklin | @julieacklin | Jan 14 3:17pm
In reply to @colleenyoung "Hi Julie, I'd like to add my welcome. How did your followup appointment go last week?" + (show)
@colleenyoung

Hi Julie, I'd like to add my welcome. How did your followup appointment go last week?

Jump to this post

I also wanted to add that my tumor is in the tail of the pancreas and has spread out of the pancreas also. It seems like most everyone is saying their tumors are in the head?

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julieacklin | @julieacklin | Jan 14 12:10pm
In reply to @colleenyoung "Hi Julie, I'd like to add my welcome. How did your followup appointment go last week?" + (show)
@colleenyoung

Hi Julie, I'd like to add my welcome. How did your followup appointment go last week?

Jump to this post

Good news! The tumor shrunk from 9 cm to 6.4cm. and also shrinkage in the 3 lymph nodes. The doctor was encouraged and we were thrilled. I just finished 5th treatment- oxaliplatin, irinotecan and 5FU. My doc does not prescribe Leucavorin. I have had very little nausea and have a good appetite. My main side effect is the cold sensation with my hands and neuropathy. I have some tingling in my feet. I do have some intense jaw pain when I take a first bite that fades as I finish chewing. This is manageable pain at this point. My cheeks have a sensation that feels like I’ve had dental work/novacain that comes and goes. Anyone else get that?
The plan now is retest in 2 months, after 4 more treatments, and if still shrinking, switch to a chemo pill, Mon thru Friday. Has anyone else had this similar plan of treatment?

REPLY
2 replies
bceg1969 | @bceg1969 | Jan 14 6:53am
In reply to @stageivsurvivor "The top five Whipple surgeons for vascular involvement in the US are Mark Truty at the..." + (show)
@stageivsurvivor

The top five Whipple surgeons for vascular involvement in the US are Mark Truty at the Mayo Clinic, Christopher Wolfgang at NYU-Langone Medical Center and John Chabot who is Chief of Surgery at the Pancreas Center of Columbia Presbyterian Medical Center-both in NYC. Douglas Evans at Medical College of Wisconsin/Froedert Hospital in Milwaukee and Dr. Matthew Katz at MD Anderson who will perform the Whipple in rare instances on stage IV patients that are younger and meet stringent criteria.

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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

REPLY
1 reply
stageivsurvivor | @stageivsurvivor | Jan 14 4:59am
In reply to @bceg1969 "My husband was diagnosed in April 2023 Adenocarcinoma of the pancreas has had surgery to bypass..." + (show)
@bceg1969

My husband was diagnosed in April 2023
Adenocarcinoma of the pancreas
has had surgery to bypass his duodenum since the tumor was pressing on it.
Liver bx since before radiation they saw something there on the cat scan..thankfully it was infection so now he has a stent
so he has had chemo and radiation for 9 months and the tumor is stable but wrapped around the mesentery artery so Dr Clancy at Brigham and women's says he can' have the Whipple ..too dangerous.The tumor is stable and hasn't spread so hopefully in one month after he gains some weight ,he's lost 40 lbs they will try a clinical trial.i know there are surgeons at Mayo Clinic that operate on its with vessel involvement..does anyone know about them?

Jump to this post

The top five Whipple surgeons for vascular involvement in the US are Mark Truty at the Mayo Clinic, Christopher Wolfgang at NYU-Langone Medical Center and John Chabot who is Chief of Surgery at the Pancreas Center of Columbia Presbyterian Medical Center-both in NYC. Douglas Evans at Medical College of Wisconsin/Froedert Hospital in Milwaukee and Dr. Matthew Katz at MD Anderson who will perform the Whipple in rare instances on stage IV patients that are younger and meet stringent criteria.

REPLY
1 reply
randyokey | @randyokey | Jan 13 7:09pm
In reply to @waltsocal "Just my experience - (after losing 40 pounds) I've been taking enzymes with every meal for..." + (show)
@waltsocal

Just my experience - (after losing 40 pounds) I've been taking enzymes with every meal for quite some time now. The enzyme I use is CREON. It seems to help me a lot with the stomach and intestine pain. As most people will tell you - everyone has different experiences. Do you know which chemo he will be getting and are they starting at 100% dosage verses say 80% ?

Hope other people jump in to give you some more suggestions.

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They call it FOLFIRINOX at 100% to start and see if he tolerates it. He also takes Creon. Thank you for your reply.

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Moderator
Colleen Young, Connect Director | @colleenyoung | Jan 13 3:06pm
In reply to @julieacklin "Hello. I was diagnosed in September with Stage 4 Pancreatic Acinar Cell Carcinoma. I know it..." + (show)
@julieacklin

Hello. I was diagnosed in September with Stage 4 Pancreatic Acinar Cell Carcinoma. I know it is not as common and I have not seen many on here with this diagnosis. I would love to hear from anyone- regarding treatment etc . I have had 4 Folfirnox treatments at Mayo/Phoenix and am doing well with little side effects. I’m scheduled for my first scan next Wednesday (stressful!) and I am so hopeful that it will show shrinkage and positive results.

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Hi Julie, I'd like to add my welcome. How did your followup appointment go last week?

REPLY
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