Nov 13, 2017 Latest post:
Feb 16, 2018
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On January 4, 2017 he was admitted to United Hospital with severe abdominal pain. He wasn’t able to eat and was starting to get jaundice. After a couple scans they found he had a large tumor on his pancreas and blockage in the bile duct. An ERCP procedure was done to place a stent and open the obstruction. A plastic stent was put in place in the event he could have surgery. He went home from the hospital Jan 8th.
On Jan 12th a EUS biopsy was done. We went to the Piper Cancer Center on Jan 13th to consult with their care team and surgeon. Another CT scan was done. We were informed he had advanced stage 3 pancreatic cancer with blood vessel encapsulation, they suspected stage 4 due to the enlarged lymph nodes and amount of them in the area. The biopsy from the lymph nodes was negative but they felt it could be sampling error. The CA19-9 tumor marker had also increased from 900 to 1500 in the last week. He was not a surgical candidate. His options were to start chemo or get things in order and live out the rest of his days. If he did chemo and it shrank the tumor or encapsulation around the blood vessels and it hadn’t spread they would reevaluate if he could become a candidate for surgery.
He chose to try chemo. We met with MN Oncology Jan 16th and an IV port was placed on Jan 18th. On Jan 19th they did another ERCP procedure to replace the temporary plastic stent with a stainless steel one. The plastic one wouldn’t hold up with chemo. They also did a Neurolisis Block on the silica nerve to try and help with some of the pain. On Jan 23rd he started the first cycle of chemo. He was given a regimen of Folfirinox. The cycles were to be every 14 days. It consisted of Oxaliplatin over 2 hours, Irinotecan over 90 min, Leucovorin for 90-120min, Fluorouracil for 2-4 min Fluorouracil CIV over 46 hours along with some premedications prior to the chemotherapy infusions. He would go home with the Fluourouracil CIV hooked up pumping in for the next 2 days. He would go back to Oncology they would remove that and then hook him up with Nuelasta that would inject about 24 hours after. He would discard that at home when it was done. The side effects started in the first cycle with nausea, fatigue, burning when eating or touching cold things.
On Feb 2nd he started meeting with palliative care. They would put things in place to help manage the pain and oversee his pain medications. He was previously on pain medications from a back injury. But now he would need more. On Feb 6th he started the 2nd cycle of chemo. This round would get even harder. He became very weak. His blood sugars went up to 500. He had the hiccups constantly. He could barely get out of bed. And had no desire to eat or drink. On Feb 17th he ended up being transported by ambulance to the hospital. He had tried to get up to go to the bathroom and fell. He was disoriented and could not get back up. When he fell he hit his head and broke his nose. They did another scan and it appeared the tumor had grown a little. He would spend the next seven days in the hospital. He did not remember the ride to the hospital or the first two nights there. At the time we didn’t know if he would come home or if this was the end. He was in rough shape and things weren’t looking good. The doctors didn’t have answers to what exactly was happening. They figured his body wasn’t tolerating the chemo. But he did pull through and started to improve. He was able to return home Feb 24th.
On March 7th we followed up with Oncology. They decided to change the regimen of chemo and try Abraxene /Gembrel. This would consist of infusions once a week for three weeks with the fourth week off. No more 46 hour infusions. Over the next few months he would complete 2 of the 3 chemo treatments each month. Labs would be too low to finish a cycle and a couple times he needed hydration. He continued to have side effects, fatigue, nausea, also swelling in his legs.
On April 26th he had another CT scan. The results indicated it had shrunk a little. The CA19-9 tumor marker had gone down to 36.6, almost normal! He met with another surgeon at United on May 9th. Basically nothing had changed enough to become a surgical candidate. He continued chemo and had a cardiogram to rule out anything else with the swelling in his legs. He also continued visits to palliative care once a month.
In July we decided to check with Mayo Clinic in Rochester if they would have any other options or do anything different. It took a while for the records to get sent there but once they received them all they felt we should schedule a consultation and discuss it. In the meantime he continued chemo and started therapy at Sister Kenny for the swelling in his legs. We also enjoyed a family vacation together in Ely. Our initial hope when he was diagnosed was that he would make it to our annual family trip together. We were so thankful for that time together!
On 08/25 & 08/28 we went to Mayo Clinic in Rochester. Labs, scans, consultations with their care team, and surgeon were done. Their conclusion is that he has advanced stage 3 pancreatic cancer with blood vessel encapsulation. But their surgeon says “I can take it out”. I think we were in shock. Of course it is a major surgery and there are risks but we have hope. They wanted him to do radiation with a low dose chemo for 5 ½ weeks first and then they would do surgery about 4 weeks after.
On Sept 13th he started radiation at Mayo Clinic Northfield along with a lower dose chemo Capecitabine. Treatments were everyday Mon-Fri. Many patients will get fatigued and some are not able to finish. But he pulled through stronger than expected. Of course he had fatigue, nausea, and the treated pain throughout but on Oct 17th he proudly rang the bell many times that he was able to complete radiation!
He will have labs, pre-op physical, CT, meet with the care team and surgeon on Nov 13th. Surgery is scheduled for Nov 16th.