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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.

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cstroop1 | @cstroop1 | 10 hours ago
In reply to @cstroop1 "I need help using this site. To the best of my knowledge no one has responded..." + (show)
Profile picture for cstroop1 @cstroop1

I need help using this site. To the best of my knowledge no one has responded to my initial input. I want to know what people have experienced who have had the same type surgery that I have had. Can you help me with this?
Carol Stroop.

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@cstroop1
My surgery is not Wipple but will be to remove a part of the tail of my pancreas. Scheduled in April of this 2026. Mayo’s Dr. Shauffley is my surgeon.
Would love comments from those who have had this type of surgery to help me understand what I am in for pre and post surgery.

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199 | @199 | 6 hours ago
In reply to @56pan "@199 It would make sense to me that you had the neuropathy after that many infusions..." + (show)
Profile picture for 56pan @56pan

@199 It would make sense to me that you had the neuropathy after that many infusions of Gemcitabine/Abraxane. Your symptoms are similar to mine, the duck walk, pain in the feet. I normally have the foot pain in the front of my right foot only at night and bad enough that it wakes me up. One thing that helped a lot was using the licocaine cream that the VA gave me to put on my infusion port before the chemo sessions. I was told I have a very deep port and it does hurt bad when the needle goes in and the lidocaine on there an hr. before I get chemo stopped that pain. I rub the licocaine cream on my right foot and then put a sock over it before going to bed. Thanks for the response and I hope this info gives you some small relief.

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@56pan The VA has been very helpful with assistive devices like cane, shower chair, walker with seat 🙂 and a power chair (light weight and fits in back of our Blazer). Does not hurt to ask your provider if you need something. I use all of the above at differing times. The last few showers I could actually stand again 🙂 Oh how the little things can mean so much 🙂 Lidocaine cream is helpful for the neuropathy. So is Hempvana nerve pain relief. I found using a massager can help the neuropathy but had to stop when I developed blood clots in my right leg. Elevating the legs on a pillow (like "Gerd" pillow) helped some on the night I had chemo.

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56pan | @56pan | 2 hours ago
In reply to @199 "@56pan The VA has been very helpful with assistive devices like cane, shower chair, walker with..." + (show)
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@56pan The VA has been very helpful with assistive devices like cane, shower chair, walker with seat 🙂 and a power chair (light weight and fits in back of our Blazer). Does not hurt to ask your provider if you need something. I use all of the above at differing times. The last few showers I could actually stand again 🙂 Oh how the little things can mean so much 🙂 Lidocaine cream is helpful for the neuropathy. So is Hempvana nerve pain relief. I found using a massager can help the neuropathy but had to stop when I developed blood clots in my right leg. Elevating the legs on a pillow (like "Gerd" pillow) helped some on the night I had chemo.

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@199 Nothing here but praise for my local VA med. center. I was in a clinical trial at the NIH and taking Olaparib since my DNA test showed I had the BRCA2 gene mutation and pancreatic acinar cell cancer, not ductal cell which was a requirement for the trial. The Olaparib didn't shrink the cancer areas at all. After release from the trial, I started at the VA and the oncologist there could not figure out why the Olaparib was ineffictive as it should have been with my BRCA2 mutation. He wanted another DNA test but Medicare wouldn't pay for it so he had the VA pay. He found that I'd had a reverse BRCA2 mutation (very rare thing apparently) which explained the lack progress on Olaparib and put me on Gemcitabine/Abraxane and it shrunk the 2 PET scan observable tumors down to where I was able to get radiation therapy. That doc is one sharp individual. All in the past now, as my recent PET scan showed more metastasization. I expected that, but that doc extended my life some. Thanks for the info on the Hempvana. I'll look it up and good luck, sir.

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