Pancreatic Cancer Group: Introduce yourself and connect with others

My surgeon says not laparoscopic or robotic. He said he will do it the old fashioned way. A cut from the bottom of my ribs to my belly button! I have heard they can do it laparoscopic but my surgeon won’t. It could be because my tumor is sitting on a major blood vessel.

Would like to know too . Following ♥️🙏

I wish you the best. The whipple scares me to death but maybe it’s the only hope. Curious if you could share any information about a Mayo Clinic whipple. Would it be done laparoscopically and perhaps even robotically? What did they tell you about surgical complications and what a post whipple surgery recovery/life would be like. Thanks.

This is exactly what I went through last October. My oncologist recommended 12 rounds of chemo. Then the surgeon at Mayo wants 3weeks of radiation. Then the Whipple. But I guess every person has a different diagnosis. My tumor is on the head of my pancreas and is sitting on a major blood vessel so they really want to shrink the tumor as much as possible before surgery. The surgeon says once you do the Whipple there’s no do over. He’s got to make sure he gets it all with good margins.

Has your PC been staged?

Where is it specifically located? This is important ... it sounds as if, given the biliary stent, that it is pressing on the bile duct?

You should review this - https://www.ncbi.nlm.nih.gov/pmc/articles/PMC8469083/ - and as many more recent papers and analyses, as possible.

What are your CA 19-9 cancer marker numbers?

My sense is that you may not have read enough to ask the questions - and, demand answers. And, since you are at a local hospital, you may be getting a standards of care approach. This is, in my mind, NOT sufficient for pancreatic cancer.

I can only say - if it were me, I would be on the phone with Anderson, Mayo, Kettering, etc - TOMORROW - and immediately travel to your choice - frankly, whoever can see you IMMEDIATELY. Please don't wait!

I'm surely no expert, as I'm just beginning my PC journey, and I don't qualify for the Whipple procedure. But I wanted to say I can relate to the energy and appetite issue. I haven't lost much weight, maybe 2-3 pounds, but the last few evenings I haven't mustered up the interest in a "real" dinner, opting instead for peanut butter toast and milk. Are you working with a palliative care MD? Mine has prescribed dronabinol to be taken before breakfast and dinner when I feel like I need it. I haven't yet wrested it out of the pharmacy, but I'm hoping it'll help with the dinner blahs. We're also relying heavily on easy-fix meals and frozen entrees, and we've shifted some heavier meals toward lunch, when I do feel more like eating. I've also begun drinking ginger ale (sweetened, not sugar-free) because it tastes good and gets more calories and fluid in me. Basically, I'm focusing primarily on calorie intake. Play to what sounds good in the moment and go for that.

Yes, I need to have someone tell me why I am not being monitored and possibly getting chemo during this period between my release from the hospital and my date for whipple surgery. This is my local hospital and I was told that my whipple would be open with a 5” incision. Was told that they would know about the need for chemo after the surgery. 30% chance I would become a type 1 diabetic and 10% to 15% chances of bleeding, organ damage, or leaky connections after rerouting my insides. Six month recovery where I would lose 20 lbs. thanks for your initial reply.

One of my symptoms was lack of energy and strength. I accept that my abilities are limited. Just can't haul around those 40 lb bags of mulch and dirt or use a pick axe to dig a hole to plant my peonies. I am able to be fully independent in all activities of daily living, enjoy socializing with friends by taking walks. In the garden, I am doing projects that require less strength. I am pleased with the effects of my weeding and my planter boxes. I have thought about disability and death a lot. I am getting chemo "borderline resect able" with beneficial effects. I do worry about being debilitated and loss of independence and how surgery might go for me. I certainly will not be weeding my garden and mowing the lawn for a while. I try and find pleasure in the things I am able to do every day and take each day as it comes.

In most cases chemo and sometimes chemo plus radiation is prior to Whipple.

Is your diagnosis and plan from a major center of excellence, or local hospital system? Is the Whipple open or laparoscopic?

Second opinions from major pancreatic centers are always appropriate.

While not a medical professional, my sense is that speed of getting started on chemo could be important. Further, that staying on chemo to beat back the cancer cells that could be in your body at related locations us important.

Long story short: dark urine, jaundice. 5 days in hospital where plastic stent was placed to drain bile duct. Two days later it clogged so metal stent was put in. Pancreatic cancer diagnosis with recectable tumor on head. Scheduled for whipple in about five weeks. Have lost 15 lbs and can’t seem to do anything but maintain. Energy and strength at about 50% of my old normal. Question is: is this normal? I’m thinking that if I go into the whipple surgery feeling like this that I will never come out and will go straight to hospice. I’m 69. Anyone else have these feelings?