Pancreatic Cancer Group: Introduce yourself and connect with others

@jopier That's can be a rough regimen. Is there a time table for how long you will be on it, before your follow up tests/scans? I can relate to the large family. I have one too. Knowing who to share what with and when is a difficult balance especially with your mom. I shared it first with my dad who was 86 at the time and my siblings. My mom passed from cancer about 26 years ago. I too had genetic testing that showed it wasn't genetic. So, I wanted to not only inform them of my diagnosis, but I also wanted to let them know that it wasn't genetic. My relatives started asking questions once I missed a family gathering or two. I wanted to take the heat off of my siblings, so I started to share things with more family. But, I needed that extra time to better process things, so I could be prepared to answer their questions. Every family is different. I wish you the best of luck with managing it. When it comes to where to go, I suggest looking at the National Cancer Institute's (NCI) Designated Cancer Centers. Here is a link for more information: https://www.cancer.gov/research/infrastructure/cancer-centers You want to go somewhere that has experience with a high volume of pancreatic cancer patients. That experience can make a difference. Maybe another member will share their thoughts on the subject?

@56pan Initially, immediately after his Whipple, he would have cramping and diarrhea with eating even small portions. That lessened after adjusting his Creon dose. After awhile, maybe 8 weeks or more, when he had no symptoms, was regularly tolerating eating, his weight was stabilized and he had began noticing he had harder stools, so he began to reduced his Creon dose slowly and he remained asymptomatic with a stable weight so he then stopped all together. Hope that makes sense.

@tomrennie
Thank you. I clicked on the link and one of the centers is here in Charleston. I cannot tell if its Roper or MUSC . Ill try to change maps from dots to list.
I appreciate the support and the info. As stated before I am in disbelief and feel like thus is not really happening to me but I am in 100% fight mode. I appreciate all ideas!

@jopier Let me know if that works for you or not? Now knowing that you are in Charleston, I can try as well. Personally, I love to hear the 100% fight mode. Having a father that was a boxer, and growing up in Philadelphia, I have thrown a few punches with and without gloves. When you do that, you sometimes get hit back. It hurts. I didn't like that. So, I would go back to my dad for more education, training, and planning. I then would do my best to execute the fight plan. If my punches didn't knock the other guy out, it was back to education, training, planning, and executing a new fight plan. Hopefully, you can prepare enough to time things just right to land the knockout punch. That was good preparation for fighting cancer. Does that make any sense at at all?

@jopier Let me know if that works for you or not? Now knowing that you are in Charleston, I can try as well. Personally, I love to hear the 100% fight mode. Having a father that was a boxer, and growing up in Philadelphia, I have thrown a few punches with and without gloves. When you do that, you sometimes get hit back. It hurts. I didn't like that. So, I would go back to my dad for more education, training, and planning. I then would do my best to execute the fight plan. If my punches didn't knock the other guy out, it was back to education, training, planning, and executing a new fight plan. Hopefully, you can prepare enough to time things just right to land the knockout punch. That was good preparation for fighting cancer. Does that make any sense at at all?

June 22 I went to my primary care dr for a sore back that was not getting better. Suspecting kidney stones she sent me for a ct scan. Here I am 71 yrs old, health perfect otherwise, a month later diagnosed with inoperable pancreatic cancer. Received my 1st 3 day chemo treatment- July 15 th in hospital, home with a “tube” for 46 hours. Toughest part is side effects of meds- such a balancing act. If i tell you that I still do not believe this is happening to me I know many of you will understand. Before treatment no other symptoms. Now either gi issues- both ways or nausea.

I will fight this with the support of my family and friends. Not ready to tell lots of people yet. My blessing is my supportive husband, daughter and son in law and my son and his fiance and the best oncologist I could hope for. Thinking of getting a second opinion. John Hopkins would be the easiest center for me to arrange a visit.
Any thoughts? I plan to win this fight!

@jopier I was a very healthy 69-year-old male who was diagnosed unexpectedly in January 2024 with bile duct cancer and was able to receive my chemo (10 biweekly sessions) and radiation treatments (28 daily treatments M-F) at a Comprehensive Cancer Center (University of Arizona Cancer Center in Tucson) then a curative bile duct resection by Dr Mark Truty and Mayo Rochester in October 2024. You can significantly increase your odds by getting treated at a Comprehensive Cancer Center that treats a high volume. Mark Truty at Mayo Rochester is among the best possible hepatobiliary pancreatic (HPB) surgeons.

@tomrennie Thank you! We spent 30 plus years close to Philly in Delaware before moving here. I try to catch all the Phillies games- they help me stay normal. When we are back visiting in Delaware I make attending at least 1 game a priority.
Maybe I will try boxing!
Today is a good day!
Joan