Pancreatic Cancer Group: Introduce yourself and connect with others

That is an inspiring story. I am still finding out how much I don’t know. I will know much more after Thursday. Thank you for sharing this!

Welcome to the PanCan club - the club nobody really wants to belong. A lot of strides have been made in extensions of life with pancreatic cancer. Any cure is dependent on the type of cancer you have, and your mutations. Please find out as much information as you can, but being from Mayo your dr will be forthright about your treatment plan. I’ve had distal pancreatic cancer since 2022, when I was 65 years old. 1 lymph node had cancer. Not all times are easy, but if you are a fighter and have a good attitude (and faith) you’ll hopefully be able to work as much as possible and carry on. My chemo treatments work and then stop working and in my case it metastasized to my liver which we treated with MRIdean radiation. Completely understandable that you want to know as much as possible about your diagnosis, and you’ve come to right place, but it’s a little premature to give too much feedback since much is dependent on the type of cancer and mutations you have. Everyone here has your back, so please be sure to post when you get the specifics, but really you are in good hands with Mayo!

Hello. My name is Brad and I am a 55 year old band and CTE teacher. I was diagnosed with adenocarcinoma on May 27. I should say I read my test results. I am waiting to meet with an oncologist on June 5.

I started with pancreatitis in mid March and had several attacks during that time. I don’t drink or smoke so the doctors here at Mayo looked deeper when they did the endoscope procedure that uses the needle. They found a mass along with a cyst at the neck of my pancreas. According to Dr. Mills, this is something they would not have found for a long while as it didn’t shop up on CT cleans.
I have used Dr. Google in absence of having had my first consultation and the long term prospects are not as good as I wish they were.

Currently I have NO symptoms. No pain, can eat anything I want, am holding my weight(after losing 21 pounds this spring).

I came to this forum to hopefully get some inspiration that some can be cured if this is caught early. I go in for a chest CT tomorrow morning so they can verify that the cancer started in my pancreas. My hope is they caught it super early, but I have been hoping for many things this spring and very few have worked out with this issue.

My friend Elise Tedeschi who I met through my volunteer work with the Seena Magowitz Pancreatic Cancer Advocacy Foundation had NanoKnife procedure performed just short of 13 years ago. Below is a link to her story:
https://seenamagowitzfoundation.org/warrior/elise-roth-tedeschi-pancreatic-cancer-patient-story/

Hi @lulu789 , the Nanoknife procedure is also known as Irreversible Electroporation (IRE).

There has been some other discussion of it in older threads (searchable) on this site, but I haven't yet heard of any personal experience with it, so please keep us posted. Anything you learn will be useful and appreciated. Good luck!

Some search results here:
https://connect.mayoclinic.org/group/pancreatic-cancer/

HI, I am Bette Davis.. I was diagnosed with pancreatic cancer at the end of March. I will be getting my third chemo treatment next week. This morning I read about a procedure called NANOKNIFE which is described as a minimally invasive procedure where electrical pulses destroy cancer cells. It is used when the tumor is wrapped around important blood supplies or ducts, etc. That describes my tumor and I am interested in learning if that procedure is done at Mayo Clinic in Rochester. I am going for an evaluation. They are reviewing all my scans and information now and I am waiting for a call to schedule first available appointment.

Thanks for the suggestion. I mentioned that yesterday to my oncologist, who wasn't really familiar with histotripsy but said it sounded similar to RFA which I had during surgery.

The major decision of the meeting was to get me started on Cabozantinib, which they are ordering. I heard it can be a hard drug to take for some patients, and that getting the dose right may take time.

Thank you for your comments, @zacharycat . You might want to look at @markymarkfl 's response from May 19 about a newly emerging technique to address liver tumors: "histotripsy". All the best to you!

Thank you! And yes I have run into oncologists who have run out of answers but the one at Duke has encouraged me as was just referred to him.

I had the same chemo treatment last year. Same side effects but it got me out of the hospital.
From there they went to PRRT, which was only one day every other month, and not hard to tolerate. That evidently reduced the pancreatic tumor to where they decided to do surgery after all.

Unfortunately I also have disease spread to the liver, so I wonder if the surgery really did much good or just bought a little time. At this point some clinical trial my be my best hope as the oncologist seems out of answers. He seemed uncertain last time I saw him and postponed our next meeting.
Anyway best of luck.