Pancreatic Cancer Group: Introduce yourself and connect with others

@tomrennie thank you for asking! Mentally, I feel extremely blessed and fortunate. Physically, I’m drained. Very low energy. I haven’t been eating much the past couple days. I’ve been struggling with cramps and dumping. It was getting to a point where I could eat a little with the Creon, however, 30-45 minutes later whenever I would drink, or sip, water the cramps would return. Doctor prescribed some Bentyl and it seems to have helped with the cramps. Maybe I can turn the corner and eat!
I still walked this morning, but now physically exhausted. I did have a bowl of rice crispies with no creon and no cramps this morning. Baby steps in the right direction.
God Bless

@dab1127 Your mindset is great. Feeling fortunate and blessed is a great mental approach to recovery. Physically, so are baby steps. Just keep moving forward. Progress is made one step at a time.

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 Hi and welcome to Mayo Connect. I understand the gut punch of the diagnosis. When I got mine, I was just kind of numb to it all. In shock and disbelief. Like you, mine was/still is inoperable. It has spread to my liver. What makes yours inoperable? For me, a few rounds of chemo gut punched me harder to let me know that I was in for a fight for my life. What chemo/chemos are you taking? You are blessed to have a good support system. You are already feeling the mental and emotional anguish that accompany the physical trauma that go with a pancreatic cancer diagnosis and treatment. I think a second opinion can't hurt even if it only confirms your treatment plan. That alone can give you some peace of mind. Where are you currently being treated?

@tomrennie

@jopier I am being treated at Roper in Charleston SC. My chemo meds are Eloxitan, Irinotecan,, and Leucovorin. Treated on a two week cycle. Monday( July 13 th) at hospital for chemo then home two days with a tube that was removed on Wed.
Inoperable because ( my understanding) is that the blood vessels are around the tumor. One reason I want a second opinion from a larger pancreatic cancer center.
Today I feel almost normal. Monday the 27 th I start my next treatment.
I know it will be a hard journey but I am very determined. Testing shows not genetic.
I have a large family whom I have not told yet. My 92 year old mother ( dad lived to 96) will have a very difficult time when I tell her. Hoping to have good news to relate when we have that conversation. Right now I am too worried about her reaction.
I appreciate the care and support from this group.

@jopier Ask your doc about "cold therapy" for chemo. It's has been successful for many people. It sounds like you've got the beginnings of peripheral neuropathy and I'd take ever last precaution I could to prevent it. If it's starting ths quick, it's won't be long until you'll have plenty of dead nerves in your legs and feet. Nobody ever told me about cold therapy. Ask around.

@yellie What were his symptoms when he neglected the Creon, ma'm?

@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.

@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?