Pancreatic Cancer Group: Introduce yourself and connect with others

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!

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!

No - a mass is a mass. I did however, have an endoscopic brushing taken (during an ERCP stent placement) that came back negative for cancer - although I was actually stage 3. Whipple surgery confirmed. I would get a second opinion quickly.

Has anyone received a false positive ct scan for pancreatic mass? I went to ER to check for fracture after a fall and an abdominal ct scan with contrast detected a mass in the pancreas head measuring 4mm. Consulted a gastroenterologist who performed an endoscopic ultra sound with the intention to do a biopsy He reported that he saw nothing and therefore no biopsy was performed. Has anyone had a similar experience?
Anne Monsees, Northport NY

Has anyone received a false positive ct scan for pancreatic mass? I went to ER to check for fracture after a fall and an abdominal ct scan with contrast detected a mass in the pancreas head measuring 4mm. Consulted a gastroenterologist who performed an endoscopic ultra sound with the intention to do a biopsy He reported that he saw nothing and therefore no biopsy was performed. Has anyone had a similar experience?
Anne Monsees, Northport NY

You need to be strong going in to surgery. Do what you can to stay physically active. I was a runner before diagnosis and managed to keep a running routine throughout my chemotherapy treatments, albeit significantly reduced. I mixed in a lot of walks when I was not able to run. I ran the Celtic Solstice 5 mile Race on December 17, 10 days before my final round of chemotherapy. This was all hugely helpful both physically and mentally. I unfortunately caught a cold the month before surgery which sidelined me and nearly delayed the surgery. So, definitely stay masked-up and healthy.

Having family and friends provide support after surgery was also hugely important. My wife has been an amazing and constant source of support, but the effort of being in the hospital for one week and providing support after returning home was more than a one person job. Your support also needs support and a break from time to time. So, if possible, line friends and family up to take turns providing support for the week of surgery and the two weeks after surgery.

My surgery went fairly smoothly. I remember a member of the surgical team asking me what my favorite song was and the next thing I remember was someone telling me that the surgery was complete and I was in the ICU. There was apparently a small crisis at the start of surgery when my heart rate dropped to 10 bpm and I needed two minutes of CPR. But I was not aware of any of that, although my wife was informed, which caused her no small amount of concern. Nonetheless, I had an excellent surgical team that provided her with regular updates on progress once things were under control.

I had concerns and questions about the number of tubes that would be coming out of my body following surgery, and these were numerous: (1) IV for delivering fluids and medication to control pain, (2) a tube and pump connected to my incision bandage to remove fluids, (3) Foley catheter, (4,5) two drains to remove fluid from my abdomen, (6) a tube connected to my mediport to provide liquid nutrition (I had wanted my port removed after I completed chemotherapy, but it was valuable to have for this purpose, as a regular IV would not have sufficed) (7) a nasogastric tube used to pump bile and fluids from my stomach. The good thing about these tubes is that they are gradually removed day by day during recovery in the hospital. Their removals serve as signs of positive progress and your eventual discharge. The nasogastric tube is the most uncomfortable and is usually removed two or three days after surgery. For some reason, mine needed to stay in for longer and my throat got very sore. An analgesic throat spray helped. My advice for while in the hospital is to get up and move as soon as possible. I was up the next day and walking laps around the floor as often as possible.

Following discharge, the two issues that needed to be dealt with were pain and eating. My pain was almost completely related to the incision. This was largely addressed with Tylenol and the pain issue gradually subsided over the first two weeks or so. 10 weeks out and there is still some minor pain related to the incision, but completely tolerable. I was fortunate in not having any serious issues with eating. As instructed, I ate multiple small meals throughout the day rather than three large meals and this seemed to work. In the beginning I tried to avoid hard to digest foods, like raw fruits and vegetables, but I have gradually added these back to my diet. I did lose about 10 lbs after surgery, but have gained most of it back. Pancreatic enzyme supplements (Creon) are essential. I was taking this before surgery and was thus accustomed to it. If you have not taken it before, it takes some getting used to, particularly knowing the correct dose. You should discuss its use with your nutritionist.

I did have one noteworthy complication 4 weeks out from surgery. My day started out ok, but I started feeling unwell towards evening and went to bed early. Sometime in the middle of the night if woke up feeling really unwell and threw up. After going back to bed, I had an episode of chills but eventually fell back to sleep. I sleep with and Apple Watch and noticed in the morning that my heart rate had gone up to over 125 bpm in the middle of the night, and stayed elevated at ~100bpm. I measured my blood pressure and found that it was low at around 90/60. My wife had the good sense to call my surgical team and they advised me to head to the ER right away. Long story short, I had developed a case of cholangitis (essentially sepsis) and spent four days in the hospital, two on IV antibiotics. This is an issue that apparently occurs in ~10% of Whipple patients. So, if anything like this happens to you, get attention right away. My wife saved my life, because I probably would have waited for things to get worse before taking action.

I am now 10 weeks out from surgery. As already mentioned, I believe staying physically active is important. After returning home I tried walking everyday, as possible. For 5 weeks I was walking 26 minute miles. At 6 weeks I noticed my pace improving to 22 minute miles and then I was doing 17:30 minute miles in week 8. I started running 2 weeks ago, staring with just one mile. My goal is to return to the shape I was in before my diagnosis.

In addition to running, I have also made staying connected with my work a priority. This was true throughout my chemotherapy treatments and also during my recovery from surgery. I am fortunate in being able to work remotely from home. I am a cancer research scientist with a lab. Staying connected with my students has been a source of strength throughout this ordeal. In addition to my running, I also began returning to in-person work several weeks ago.

So, my final advice is to keep doing the things that give you strength and purpose, even if only for a fraction of the time and effort that you used to devote to them. Your strength will return, and so too your time and effort.