Pancreatic Cancer Group: Introduce yourself and connect with others

Hi my name is Marlene
My dear cousin was diagnosed with stage 4.
Just wondering if everyone was aware John Hopkins University has a vacine and surgical procedures that sound promising

That's wonderful, I'm so happy for you. He doesn't want surgery, unsure why. I pray you and everyone beats this horrible monster.I'll keep you in my prayers. God Bless

Hi Joann @survivor2 ane Marlene @sunshine041594 welcome to Mayo Clinic Connect and the Pancreatic Cancer support group.

@survivor2 I bet @marvinjsturing would like to connect with you. He just recently found out that his pancreatic cancer has returned and is now getting radiation treatments. Joann, you must be tolerating Capecitabine well if you're able to continue to work and normal life (although nothing is normal right now). What is your work? Are you able to work from home?

@sunshine041594 is your cousin being treated at Johns Hopkins? How is he doing?

My husbands pancreatic cancer has returned, he is currently undergoing chemo and radiation is being recommended, I would like to connect with anyone in the same boat.
Thank you.

Hi, my husband was diagnosed with pancreatic cancer Jan 2017, did chemo, had Whipple May 2017, followed by more chemo. Had been NED until Jan 2020 when we found out the cancer has returned. He is on chemo and radiation is being recommended. I would like to know others experiences with radiation and types of chemo. He is scheduled for a endoscopy tomorrow, partially to put in some “gold beads” as markers for the radiation. Has anyone else had this? With COVID I don’t want him to have the procedure if it’s not absolutely necessary.

Hi, my mom has a closer recurrence than your husband (Whipple 09/2019) but very similar situation. She's now doing radiation while she's been on chemo (took about 4 weeks off for radiation). She didn't need to have "gold beads" put in place (I know they are used to pinpoint the location but it might depend on what type of radiation is being used). My mom had a 4D CT scan to mark her and everything was done externally and very easily. Did you ask about options for the radiation that might not need a procedure done? It might be necessary in your husband's case, but like I said my mom didn't need to have anything like that done. Best of luck to you both...there is nothing easy about this cancer and now with the COVID-19 situation it only adds to our worries and concerns.

We've made the decision not to have the procedure done tomorrow. With COVID-19 we believe the risks outweigh any benefits and they can do the radiation with out the beads.
The radiation he will be receiving will be 5 days, either a monday -friday or Wednesday, Thurs, Fri, 2 days off then finish up on Monday and Tuesday. The actual radiation session is 1/2 hour. Its a one time thing - 5 days and thats it. Is your mom's radiation similar?

Yes, I've tolerated the drug fairly well.
Yes. I have side effects. Primarily the hand and foot syndrome that causes blister, skin peeling and extreme dryness but that's nothing compared to the nausea from the intravenous
mediations. I have a job that I love in youth development. I make everyday count and always remain positive. When my cancer came back it was in my lymph nodes, radiation wasn't recommended they put me back on chemo and because my scans started to show no growth they moved me to this maintenace drug (Capcetabine) and so far it's worked ok. I simply refuse to give up. I know how hard this road is and I fight everyday to support and encourage fellow Pancreatic cancer patients and their families.

@survivor2 @sunshine041594 @baileycody @thally5299 I have several posts in this thread. Things have changed significantly since my first post. I was diagnosed with pancreatic cancer in May of 2014. My Whipple was done in June of 2014. Following surgery, I had 6 months of chemo - 3 weeks on and 1 week off. Two weeks after my chemo, I spent a week in my local hospital. I was sent home, but a week later, I was in the hospital again. This time my doctor sent me to Mayo where I spent another week in the hospital. It was determined that because of a rare reaction to my chemo, I developed atypical Hemolytic Uremic Syndrome. I spent most of 2015 going to Mayo to be treated for aHUS. By the time, that was under control my kidney function was down to about 15%. In June of 2019, I had my 5 year PET scan. Once again, there was no evidence of disease and Mayo told me I didn't need to come back. Last December we moved and I had to find new doctors. My new oncologist wanted a PET scan done. Two doctors looked at my scan. One said it was inconclusive. The second doctor said it looked like cancer. I went to Mayo for a second opinion. They did a PET/MRI and a biopsy. It was determined that my cancer had come back on what was left of my pancreas. Because of artery involvement, surgery is not an option. Because of my kidney problems, I can't have chemo. This morning, I had my 8th radiation treatment. I am scheduled for a total of 25 treatments - 5 treatments a week. After my radiation is done, I have to wait 3 months. Then I can go back to Mayo to see if I can have surgery to remove the rest of my pancreas.

Yes, that’s exactly what my mom is doing. She just has 2 more treatments left and goes back to chemo next Monday. She’s had no side effects...thank God. If you have any questions don’t hesitate to ask me 😊