Pancreatic Cancer Group: Introduce yourself and connect with others

My CA19-9 started at 160 and went down after each round of chemotherapy. It was 29 before my Whipple surgery and dropped to 7 after surgery. I would also like to think this means that my cancer is gone. However, I think it is not that simple. First, CA19-9 is not only produced by cancer cells, and so its use as a biomarker for pancreatic cancer is not perfect. It can be high for multiple other reasons besides cancer. Second, supposing only your cancer cells produce CA19-9, there is certainly going to be a lower limit of detection. You can still have cancer cells present with low levels of CA19-9. I think it's safe to say that the number of cancer cells producing CA19-9 has been dramatically reduced through treatment and surgery. My care plan moving ahead involves monitoring for increases in CA19-9 levels, cell free tumor DNA in blood, and CT scans. Until any of these tests suggest otherwise, I am considering my self "cancer free".

Hello - I am new to the group. I agree with getting more testing. I had a stent in November with the brushing during ERCP. That biopsy was negative - as was one later with a needle biopsy. The tumor was visible on CT and CA-19-9 markers were 350. My oncologist said “you do have cancer” with or without positive biopsies!

I am DonnaMichelle and was diagnosed with pancreatic cancer on November 7, 2022. I have had 7 rounds of Folfirinox and am hoping it will get me to the Whipple. So far there has been no shrinkage and the tumor is surrounding my SMA and SMV so the surgeons don’t want to do the surgery.
My side effects could be worse - however my concerns are now causing great anxiety!

Thank you for sharing your story. I am seen at MSKCC and also have involvement of the SMV despite shrinkage of the tumor. I have been reading about the MRI guided radiation treatment and it seems to give very good results. I have been recommended to try more chemo therapy and see what happens with the SMV involvement, see if there is more shrinkage of the tumor.

I did the same treatment as you. It is a balancing act to keep your body healthy while doing this deadly chemo. But work hard to eat protein and stay active walking, etc. to be able to continue it. My numbers began a hard fall about 4 months into my first round of 12. This is when major shrinkage began as well

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?

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.

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.

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.

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.