Pancreatic Cancer Group: Introduce yourself and connect with others

Hello Everyone, I was diagnosed with a 3 cm Mucinous Cyst on the head of my pancreas, and advised by Dr. to get a Whipple procedure as the cyst has a high probability of turning cancerous. Two questions I have as I consider the Whipple procedure, Is an Open Whipple or a Laparoscopic Whipple better? What are some of the most common permanent conditions after Whipple? Thank you for your feedback!

My husband, age 69 had some back pain about 1.5 years ago. Mentioned it to the doctor. Five or six months later it got a lot worse, so back to the doctor. He was an active xcountry skier, hiker, white water kayaker... and just thought he'd injured his back in some way. Spent all last summer trying to get a diagnosis. And after some chemo and imunotherapy for lung cancer, found that he had been misdiagnosed (by doctor here and also a second opinion from Cleveland Clinic). So, started over with tests and diagnosing. Pancreatic cancer, stage 4, with mets to bones (back), lungs, lymph nodes. Radiation on some of back lesions last fall and after 3 or 4 months his back pain has lessened... from radiation or chemo? CA19-9 numbers were over 39000 last November. Chemo every two weeks since then with Folfirinox. Just had treatment #10. Total exhaustion most of the time, lack of appetite, nausea. The past two weeks we scheduled extra hydration and anti nausea through infusion every few days and that did seem to help. Doctor is saying total 12 treatments of folfirinox, then we'll see. His CA19-9 numbers fell steadily until the one yesterday when it went from 1090 back to 1176. Still very high, but compared to 39000+, it has dropped a long ways. CT scans have been unremarkable, but oncologist says improvement. So that is where we are. Caught us completely off guard as my husband was one of the healthiest people I knew.... exercising daily, etc. Now having trouble getting off the couch. Any suggestions, insights are welcome. Thank you.

@sheridanb, I can imagine that your husband's diagnosis came as a shock to both of you. The side effects of chemo are so rough. Only 2 more treatments to go. How are YOU doing?

Hello Everyone, I was diagnosed with a 3 cm Mucinous Cyst on the head of my pancreas, and advised by Dr. to get a Whipple procedure as the cyst has a high probability of turning cancerous. Two questions I have as I consider the Whipple procedure, Is an Open Whipple or a Laparoscopic Whipple better? What are some of the most common permanent conditions after Whipple? Thank you for your feedback!

Hello Everyone, I was diagnosed with a 3 cm Mucinous Cyst on the head of my pancreas, and advised by Dr. to get a Whipple procedure as the cyst has a high probability of turning cancerous. Two questions I have as I consider the Whipple procedure, Is an Open Whipple or a Laparoscopic Whipple better? What are some of the most common permanent conditions after Whipple? Thank you for your feedback!

@drmch
Have you spoken to more than one surgeon?
More than one oncologist?
Everyone’s case is different, but there are more than two chemo concoctions now and many undergo this surgery once chemo has shrunk tumors and in many cases caused necrosis in areas. Once it is in your blood stream you must stabilize the situation prior to surgery.
I am a 29 month stage IV survivor. I have gall bladder, spleen, two major nodes of my liver and portion of my pancreas removed. This only occurred once the chemo had things “under control”. Please schedule for more than one opinion. I consult with various physicians across the country and learn something new from each.
May God give you wisdom and faith to help your wife fight!

Hi there Marcia,
I had tumor in the tail, so I had distal surgery which included removal of spleen in October 2022 with some complications from surgery. Hepatic and celiac arteries showed soft tissue area in December,but it was regarded as scar tissue at that time. I began chemo in January or delayed due to my complications. 12 rounds fulfirnox but no radiation. In November 2023 my CA19-9 starting climbing again at a quadrupling rate. Drs finally did a MRI and EUS-__ERCP in December and found a couple of lesions in my liver and my new “suspicious” masses in my abdominal peritoneun and by the way these areas didn’t show up with uptake on my PET scan. GI dr who did EUS said samples from peritoneum and hepatic artery difficult to get but based on the visual testing of it he suspects those are cancerous, as well as my new UCLA (I switched from Hoag). So I continue on GAC until it’s no longer effective. My tumor tissue currently being tested for CLD-18 protein too see if I will qualify for that trial it’s just something I’ll have ready to go in my back pocket when GAC stops working. Good luck to you on your PanCAN journey. What do you wear on your head now?

@gmaryanne,
Interested to know, do you visit all the various provides in other parts of the countryor is it virtual. Trying to get a virtual second opinion for soninlaw, 4.5 year survivor. It goes better with a dr. referral, I know. Trouble is I don’t know which Dr to contact. Major midwest medical center, but the main Doc seems to be oncologist. He still has pancreatic tumor but no further growth or new lesions found. that team now says Hospice or Palliative care. which he doesn’t want at this point. Should he have another primary care doc who can maybe look in with fresh eyes? Any opnions would be welcome. Thank you.

Hello, I had the open whipple surgery in November. When I went to set up the Laparoscopic surgery, my surgeon only did the Open Whipple. The Open Whipple is typically around 4 hrs. (mine took 3.5 hrs.) The Laparoscopic surgery takes around 7-8 hours. I was 72 years old and he felt that being under anesthesia for only 4 hours is much better than the Laparoscopic surgery for 8 hours which made sense to me. He also said that difference is either an incision 6" long or 6 1' incisions also he felt that feeling with his hands gave him an advantage over the robot.....He also gave me the option of monitoring my IBMN which I quickly dismissed as I didn't want to gamble on when it will become cancerous. I was in the hospital for 6 days after the surgery, I was up & walking the next day. The biopsy revealed that I had Colloid Carcinoma. All 37 lymph nodes and the resection were clear....I have to be on Creon for the rest of my days but no big deal, I was diabetic before the surgery. I did not need chemo or radiation but need follow ups with a scan every 6 months. Hope that helps...

@gmaryanne,
Interested to know, do you visit all the various provides in other parts of the countryor is it virtual. Trying to get a virtual second opinion for soninlaw, 4.5 year survivor. It goes better with a dr. referral, I know. Trouble is I don’t know which Dr to contact. Major midwest medical center, but the main Doc seems to be oncologist. He still has pancreatic tumor but no further growth or new lesions found. that team now says Hospice or Palliative care. which he doesn’t want at this point. Should he have another primary care doc who can maybe look in with fresh eyes? Any opnions would be welcome. Thank you.