Friends, many of you are wondering how this whole "pancreatic cancer thing" transpired -- and also what the current status is of George's treatment. I'll use this page to keep you up to date on the medical side of things in an effort to save George from having to repeat himself too much on the phone, or during in-person visits. To read all my blog posts related to George's fight: From Patient to Caregiver. Feel free to direct your questions to me. Thanks! ~April
February 2014: In roughly the third week of February, George noted his stomach was hurting and not going away. Around the same time he noticed his urine had turned dark, and didn't seem to lighten up no matter how much water he drank. On February 26 he visited his general practitioner who noticed right away that he was jaundiced (yellow tint to his eyes and skin, and the cause for the dark urine). At that time, he suggested a change to George's anti-seizure medication (the one he was on was known to cause liver damage).
March 2014: For two weeks, George's general practitioner monitored his blood, hoping to see a resolution to the liver numbers, a reduction in the therapeutic anti-seizure meds, and a reduction in the jaundice. As the medicine left his system, however, his jaundice continued to worsen and the stomach ache persisted. On Friday, March 24th, an ultrasound was performed that showed gallstones in the gallbladder, and an obstruction in the bile duct (probably a gallstone, he was told). The following Tuesday, the 27th, we went together to meet the endocrinologist who would remove the obstruction. That was when we first heard the word tumor. (I recounted the visit here). On the 28th, George underwent an ERCP ("endoscopic retrograde cholangiopancreatography") procedure and a plastic stent was inserted to open the bile duct and relieve the jaundice. On March 31st, George was officially diagnosed: Stage II pancreatic cancer.
April 2014: April 9th, George's diagnosis is changed based on the results of a PET scan: Stage IV. "Metastatic pancreatic neoplasm, with the primary lesion possibly in the head or tail of the pancreas (masses in both), with metastases to the liver and left supraclavicular regions." I wrote about this day here. His Mediport placement happened April 24th (I wrote about it here), and the plastic stent opening the bile duct was replaced with a more long-term metal one on April 23rd.
Chemotherapy ("modified Folfirinox" regime) began Monday, April 28th. One of the drugs in the regime is administered via a take-home pump. Wednesday, April 30th we returned to the chemo lounge to remove the pump, and because the nausea and fatigue were so acute, George received fluids and anti-nausea meds intravenously. On April 28th he weighed 179 lbs. One week later, he weighed 172.
May 2014: May 5th, after one round of chemo, tumor marker CA-19-9 is down from 700 to 500! May 12th, chemo round 2; his weight has come back up from 172 to 178. A new anti-nausea med is added to the mix: Emend.
June 2014: Chemo continues. June 9th marked round 4 of the Folfirinox (weight steady at 175 lbs). Pre-med Emend has greatly helped in reducing the nausea. Although not a walk in the park by any stretch, it does feel like we are getting the hang of keeping ahead of the fatigue and nausea. Now the main side-effects are peripheral neuropathy and hiccups, sores in the sides of his mouth, and heartburn. On June 11th, I went solo up to Stanford and attended my first Pancreatic Cancer support group.
June 13th (Friday the 13th): George has a series of seizures culminating in a tonic-clonic (grand mal) seizure while at home with Kyle & I. The ER doctor calls the seizure a "red herring" and he is released. (I wrote about the experience here.)
June 17-20: George and his brothers, Milo and Craig, travel together to Tennessee to visit family.
June 23: PET scan -- results positive: the cancer has stabilized (no tumor growth or shrinkage). Tumor marker continues to bounce between 500 and 600 (down from the original 720. The modified Folfirinox chemotherapy regime will continue every other week. Weight: 170 lbs. Next scan will be September.
July 2013: Rounds six and seven of chemo under his belt now. He seems to have developed an allergy to the Oxaliplatin. After Round Six we had to stop the car on our way home -- he felt like he was going to choke. His throat was tight and he was afraid to try to swallow. By the time we got home that sensation was better but he was weak and needed help to walk in the house. Then, during Round 7 his tongue started to swell and his legs and arms grew numb. By the time the reaction began, he had already completed the Oxaliplatin, but the doctor and nurses said his symptoms were consistent with the Oxaliplatin. They gave him medication to reverse the reaction.
July has been marked by increased fatigue and pain. I wrote a general update of how he was feeling here mid-month. As I write this on 7/30 he's been laid up with severe abdominal pain for 3 days straight. Earlier in the month is was more like a day of needing to stay in bed (typically after a day of increased activity, like a hike) followed by some good/better days. This week he's really suffering. We aren't sure if this a side-effect of the chemo or the natural progression of the cancer...
At his last appointment his weight was holding steady at 170 lbs, and his CA-19-9 tumor marker was continuing to come down.
August 2014: He took what he thinks may be his last flight, up to Oregon to visit his youngest, Kyle, the first weekend of August, and did Folfirinox round 8 right when we got back. As I wrote in the July notes, it seems as though he is developing an allergy to one of the Folfirinox medicines: the Oxalyplatin. The pain is in his abdomen is increasing and his weight is continuing to drop. The bad days are starting to out-number the good days. On 8/13, I wrote a detailed update here.
CT scan on 8/13 showed no growth to the original tumor, but possible new growths in the liver and lung mets, though the CA-19-9 tumor marker is at its lowest point in the whole process: 120. Round 9 of the Folfirinox chemotherapy on 8/19 is canceled/postponed due to a significant weight loss (25 lbs in four weeks), weakness, pain, and not being out of bed more than 3 hours each day.
At the oncologist's suggestion, we went to the gastroenterologist who had first diagnosed the cancer to see if he could do a spinal block to help with the pain. Unfortunately he felt the pain was not in a prime location to be helped with this particular procedure.
He started Hospice care on 8/21 to help manage the pain and also to provide family support (I wrote about it here). We don't know yet if it is temporary or permanent. Our next visit with the oncologist to discuss treatment options is 9/8. Trip to my brother Dale's for 8/23 was cancelled/postponed. Instead, Dale and Kyle came to George's. We spent a lot of time all together the last week of August, including hosting a large estate sale. Many friends and neighbors got to visit with George, too. He was more active than I'd seen in awhile!
September 5, 2014: At 8:15a on 9/5, my father died. Thankfully it was swift, and while pain was a constant thing he dealt with during his time with this disease, fortunately the pain he felt at the end was relatively short-lived. He woke Wednesday morning in terrible pain, something was clearly wrong. Our Hospice nurse was on hand, helping with pain medicines, but it was very hard to get on top of. Also, he wasn't totally sure if George's pain was the cancer, or a different condition. George requested to go to the hospital, so I drove him. This was around 1p on Thursday. When we arrived at the hospital, they began to treat his pain, as well as his terribly low blood pressure. They also ordered several scans of his pelvis and abdomen. By Thursday night his pain was much more managed and we thought perhaps it was a case of severe constipation from the opiates. I went home to sleep. Friday morning, however, the doctor called me and said they'd discovered George had a blood infection stemming from intestinal bacteria. The pancreatic tumor was pinching the small intestine causing his bowels to back-up, twist and fold. With the plummeting blood pressure, the doctor let me know I needed to call my brothers, and George's time was short. And so all day Thursday people traveled to George's side. By 10:30p we were all together. By then his pain was much more under control. He was somewhat coherent and communicated a small bit off and on Thursday. I know he knew we were all there with him. He raised his eye brows when spoken to. We talked to him a lot and held his hands. When he took his final breath, we were all there with him -- Dale, Kyle and I, as well as George's brothers Milo and Craig. All his champions.