Pancreatic Cancer Group: Introduce yourself and connect with others

Hi Colleen,
Thank you for the information. There are also YouTube videos showing exactly how it’s done. My husband has stage IV pancreatic cancer, but is otherwise healthy and only 54. I feel it’s an option. He’s completed three cycles of chemo, his CA-19 Dropped from 22,000 to 10,000, but he hasn’t had another CT scan done to fully evaluate his response to Folfirinox. I was just wondering if others had the procedure done. From what I understand, there are about 50 hospitals in the United States currently doing it.

Hi @marvinjsturing, I was thinking about you today. How are you doing?

About 2 years ago, I had my 5-year and "final" scan at Rochester. The following December, we moved and I had to find a new oncologist. He ordered a scan that indicated that my cancer was back. Now I am going to Mayo every 3 months for scans. As of January of this year, the cancer is not growing or spreading. I have another scan scheduled for next week Thursday. As long as the cancer is not growing, there will be no treatment because doctors are afraid that chemo will cause further damage to my kidneys. I am taking life one day at a time and am enjoying the coming of spring. It will soon be 7 years since my diagnosis of pancreatic cancer and my Whipple procedure. I thank God for every day of life.

I'm so glad to hear your good report, @marvinjsturing, and I so appreciate the attitude you bring to us all!

Just had a Whipple procedure that was aborted 3 weeks ago, had been treated with chemo and radiation tumor had shrunk Doctors felt was respectable but was still too attached to a blood vessel. Ever heard of that situation before, trying to decide on plan B Oloparib was mentioned or surveillance with a scan every 3 mos.

Hello @ russelltturner,

I see this is your first post on Connect, welcome! You mentioned that your doctor is thinking about using Oloparib. I found some information on the NIH website that may be helpful to you. Here is the link, https://www.cancer.gov/publications/dictionaries/cancer-terms/def/olaparib.

How are you feeling? What type of symptoms do you have now?

Just recovering from surgery, as far as cancer symptoms feeling fine, would not know I had cancer based on how I feel. I handled chemo and radiation with no problem. My oncologist will do a CT scan in May see if anything has changed with the tumor. After treatment everything was good going into surgery just could not get the tumor out.

Has your tumor been molecular analyzed? That drug is a PARB inhibitor used for BRACA mutations. The oncologist must have some insight as to why that drug could be effective.

Also, was your radiation SBRT?

Good luck with your new treatments.

I think he said he found a gene that I had but I could be mistaken I will have to ask him I have not decided yet whether to take that. Those are good questions I feel pretty good about my oncologist Lincoln Nadauld St George Utah. but I will get those answers.

Hi @russelltturner,

As you plan for your future treatment, I would encourage you to not only ask questions but get a copy of all reports, including scans, pathology reports and/or genetic testing. This can usually be done through the patient portal. Most tests are recorded there for the patient to view and also print. It is best for you to know as much about your health situation as you can in order to talk with your medical team with confidence.

Can you access the patient portal?