Pancreatic Cancer Group: Introduce yourself and connect with others

Lost. My wife is 78. She has battled pancreatic cancer for over 5+ years. During the pandemic her colon was removed. She is taking part in a trial at a nearby hospital. Two weeks ago her CA19-9 numbers decreased. This was the first decrease since the trial began. The new number increased some 20% to over 100,000 I am at a loss as what I can do. She sensed there was a problem as she experienced vomiting on several occasions. She saved my life when she married me 31 years ago. Hoping no praying Mayo has some ideas.

Thank you 🙏🏻 so very much.

I'm a long term survivor -- luck. I was diagnosed with the most common kind of pancreatic cancer in February 2016. I was borderline for the surgery but had the Whipple procedure in July 2016, and for the following 9 plus years my status has been No Evidence of Disease.

I had 2 positive lymph nodes after my surgery, so was deemed at stage IIB.

The outlook looked grim at various times. We all must take it one day at a time.

CG

My hubby was diagnosed in Aug with cancer in head of pancreas with liver mets. He is on Coumadin for mechanical valve which always causes problems . He had a gastric jejunostomy bypass so he can eat as the tumor blocked his small intestine. Dr has said no candidate for surgery so he has opted for pain management at home with Hospice. He is ambulatory with walker but losing strength daily. So far has lost 25 lbs in 6 weeks. It's getting very stressful. I can get out fir short periods but I would like to know what to expect and when. One nurse said Portal vein will block and swelling and ascites. Blood clots etc. I am a retired nurse but this is all new to me. He just wants to die and I hate to see him in so much back pain. He fears constipation from Oxy so just takes Tylenol which is only mildly effective. Thanks for listening. It's good to see positive stories in the midst of this.

Hi, just wondering what type of pre-meds would the doctor prescribe before chemo. I will be receiving chemo & I am preparing myself. Thank you

Just a note-
Doing chemo isn’t the most awful thing now. A good doctor can prescribe pre-meds to begin infusions. I plan my life around a few days to stay close to home during infusion weeks but I always have plans to get up and out after those days. Even if I am not at “full speed”!

@reme51 No matter what you have to stay positive and if your doctor seems negative I would switch doctors to one that gives hope. Mine said surgery is the best and I was lucky very few actually qualify for surgery first most have to do chemo to shrink the cancer so they can do surgery. So know even if they start with chemo that is not the end there is a chance after 5 or so treatments it will improve for surgery then you will resume chemo after.

@grams2015
So you are having surgery before starting chemo?
That's what I'm hoping for but the doctor at OHSU wasn't in agreement. He has a "tumor board" meeting next Wednesday and will then tell me his plan for treatment. If I don't want chemo, he says he will refer me to a different surgeon 🙁
He didn't really give me much hope or information, stating that only 4 out of 10 will live 5 more years! And as far as treatment, he needs to meet with the board next week before giving me more information.
Good luck on your surgery!

@pat32755
Yes. It’s dependent upon where the mass is in the pancreas.

My husband was diagnosed in August this year. He had his port placed last week and starts chemo this week. He is stage 1 or 2. Do they every remove the cancer without having to do the whipple?

@reme51 I have surgery scheduled October 9th they will remove the head of pancreas, some of small intestines, lymph nodes at least per my CT it had not spread so I’m hoping when he gets in there it remains true then I will have chemo once he states I’m ready.