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.

valerina30 | @valerina30 | Jun 19 1:14pm

After being diagnosed with mass on pancreas. Im waiting for biopsy results. Im also gonna try RSO. Has anyone tried it? I've heard great results with this. RICK SIMPSON OIL.

56pan | @56pan | Jun 19 2:56pm

In reply to @valerina30 "What does it do for you" + (show)

I don't know yet. Medicare won't pay for it but I found out today that the VA will. If/when I've had a session or two, I'll report back. My leg/feet chemotherapy induced neuropathy is very bad.

valerina30 | @valerina30 | Jun 19 6:20pm

Ok good luck, r u taking any natural vitamins for it? I read Alpha-Lipoic-Acid ( ALA) is effective for neuropathy.

56pan | @56pan | 6 days ago

In reply to @valerina30 "Ok good luck, r u taking any natural vitamins for it? I read Alpha-Lipoic-Acid ( ALA)..." + (show)

I'm taking B12 on the advice of my oncologist, also gabapentin. Neither seem to make any difference at all.

valerina30 | @valerina30 | 6 days ago

In reply to @56pan "I'm taking B12 on the advice of my oncologist, also gabapentin. Neither seem to make any..." + (show)

Sorry to hear that. Why not try the ala its all natural an known to work.

barnesjt59 | @barnesjt59 | 6 days ago

I am new to this group. I have Pancreatic Cancer and Mets to my liver. I did the 12 rounds of Fulfirnox and got my CA19-9 down to 670 from 19000.

Now it is growing again on the liver and my CA19-9 is up to 37000. So doing a different chemo now because Fulfiri also did not work. Now doing Gemcitabine + Abrax.

hakanb | @hakanb | 6 days ago

Acupuncture is good for pain, I learned that it does not cure neuropathy

barnesjt59 | @barnesjt59 | 5 days ago

In reply to @hakanb "Acupuncture is good for pain, I learned that it does not cure neuropathy" + (show)

I do not have pain yet. Just occasional stomach pain and I take Creon with my meals to avoid that pain…

rosebella | @rosebella | 5 days ago

I am new to the Group. I have been reading posts for a couple weeks. My husband, age 63, was diagnosed with Pancreatic Cancer on 8 May after a CT showed a mass and MRI confirmed. He then had an EUS pancreatic biopsy which showed PDAC, a colonoscopy that was normal, an exploratory lap, and port placement in chest. The tumor is in the pancreatic head with vessel involvement. At first they said Stage 3 and plan was chemo & radiation to get to surgery. After the Lap they saw 2 tiny nodules on the liver that were too small to be see on imaging. One came back + for cancer so now Stage 4. The Chest CT was normal. His tumor markers are all normal. CA 19-9 was 2. They said some people don't have abnormal tumor markers. He starts Chemo on Mon 23 June with Nalirifox. Overwhelmed & scared is an understatement. I cry -- a lot. Several posts on this site have been helpful.

kakalena | @kakalena | 5 days ago

In reply to @barnesjt59 "I do not have pain yet. Just occasional stomach pain and I take Creon with my..." + (show)

My oncologist recommended B complex, which I was already taking. He also said Alpha lipoic acid, and L-Glutamine might help. I am on gem-brax and just had my 8th treatment which is when my neuropathy in feet started., so am taking all of the above, plus Epson salt foot soak really helped. As of today. 3 days later, no pain or tingling.