elizabethw

Thank you Marion. That reminder came just at the right time.
Elizabeth

Hi All,

I know some of you are seeking out patterns in people’s medical histories. In case it’s helpful, here is a fuller version of Peter’s medical history, as written up by the Mayo Clinic during his last hospital visit there before returning to Alaska (interventions once we returned to Alaska were minimal).

[From 14-Jul-2015]
Age: 29
Sex: M
Patient is a 29 year old male who was admitted post ERCP (Endoscopic retrograde cholangiopancreatography) and PTC (percutaneous transhepatic cholangiography) for observation.

He has the following oncologic history

1. ~2007: Diagnosed with ulcerative colitis, previously treated with Imuran, Asacol, and a single course of prednisone. Not currently on medication. Controlled with diet.

2. ~2008: Diagnosed with primary sclerosing cholangitis, not currently on immunosuppressant therapy. Controlled with diet.

3. October, 2014: New jaundice, pruritus, and fevers. Received antibiotic therapy.

4. March 4, 2015: Local Gastroenterologist recommended abdominal ultrasound due to rising CA 19-9 levels. This showed central intrahepatic bile duct dilation.

5. March 20, 2015: ERCP showed left main hepatic and right main hepatic duct with multiple diffuse stenosis. Stents placed. Biopsies with brushing performed which showed abnormal glandular proliferation. Development of post-ERCP pancreatitis resulting in hospitalization for one week.

6. March 31, 2015: Presented to Mayo Clinic, Department of Gastroenterology, Dr. LaRusso; recommended further work up.

7. April 1, Ultrasound of the abdomen showed subtle isoechoic central hepatic tumor, likely cholangiocarcinoma, results in intrahepatic bile duct dilatation involving both the right and left lobes. Stents are noted in the extrahepatic bile duct. Hyropic gallbladder.

8. April 3, 2015: MR Elastogram performed which showed an approximate 5 cm hilar mass obstructing both right and left lobe bile ducts (both massively dilated), highly suspicious for cholangiocarcinoma. The biliary stent seen on outside CT is below the level of the mass and isn’t decompressing the biliary tree. There appears to be direct invasion of the mass into the left portal vein near the bifurcation, and at least 6 distinct lesions in both hepatic lobes suspicious for metastases The hilar lesion has increased from about 4 cm on 3/21/2015 to 5cm on today’s study.

9. April 6, 2015: Transplantation consultation with Dr. Poterucha; deemed ineligible for liver transplant.

10. April 7, 2015: ERCP performed which removed one stent from the biliary tree. A biliary tract obstruction was noted, secondary to what appears to be a mass, in the bifurcation of the right and left hepatic ducts; bilateral biliary systems were trained with stents (2). Dilation and brush cytology performed which was negative for malignancy. FISH for biliary tract malignancy was abnormal indication a high suspicion for malignancy or high-grade dysplasia of the pancreaticobiliary tract. Biopsies taken at the hilar stricture which showed minute detached cluster of atypical epithelial cells in a background of ulceration and squamous metaplasia with acute inflammation.

11. April 8, 2015: Medical Oncology consultation with Dr. Grothey; recommended systemic chemotherapy, gemcitabine and cisplatin, once bilirubin levels decreased.

12. April 29, 2015: In Alaska, ERCP showed the hepatic duct bifurcation contained multiple stenosis. Dilation with a 6-mm balloon dilator was successful, and two additional 7-Fr by 12 cm plastic biliary stents were placed.

13. ~May 2015: He started to present with fever and chills, and he underwent placement of an external drainage catheter. He seemed to have been started on meropenem for possible recurrent cholangitis (though this is unclear) with no planned stop date.

Subsequently post PTC insertion his bilirubin does not appear to be improving following placement of the percutaneous biliary drain. Therefore plan was to have the stents removed with an EGD and place a percutaneous biliary drain in the right duct. He therefore was planned to undergo a right side PTC and a left cholangiogram to make sure the left percutaneous biliary drain is in position.

Today he underwent an ERCP in which:
-Four stents were removed from the biliary tree.
-A localized biliary stricture was found. The stricture was secondary to primary sclerosing cholangitis.
-One plastic stent was replaced into the left hepatic duct.

There was a plan to perform RFA, however given the bleeding from the duct post stent removal and necrotic looking mass at the hilum it was deferred. He then subsequently underwent PTC.

Under interventional radiology he underwent
1. Cholangiography
2. Placement of a 10-French Cope biliary drainage catheter in the posterior right biliary tree
3. Injection of the 10 French Mac-Loc drainage catheter in the left biliary tree. The left side looked to be draining appropriately.

On arrival to the floor, he was well. Had no acute complaints. His vitals were stable.
[Written 15-Jul-2015]

He then had a repeat procedure on 7/15 where there was:

1. Conversion of the right hepatic lobe biliary drain to a 10F BCL with locking loop in the duodenum across the ampulla. Additional sideholes fashioned to extend across the obstructing tumor.
2. Conversion of the left hepatic lobe biliary drain to a 10F BCL with locking loop in the duodenum across the ampulla. Additional sideholes fashioned to extend across the obstructing tumor.

These 10F tubes were found to not drain appropriately and his percutaneous biliary drain was noted to drain a milky white purulent fluid. He was taken back to IR and both the right and left transhepatic biliary drains were then externalized and exchanged for 8 Fr. Locking BCL catheters with pigtails repositioned in into the peripheral dilated ducts.

He felt well after the externalization procedure, and remained afebrile. His leukocyte count was noted to be 23, increased from 15 the day before. During the admission we also consulted ID given the fact that he was on meropenem. They recommended:
1. Please continue Meropenem 500mg IV every 8 hours to complete 14 day course ending 7/28.
2. If he is still in town after finishing IV therapy, please call Infectious Disease and set up a follow-up appointment.
3. If he returns home before his IV antibiotic course is complete, please arrange followup with Infectious Disease with his home doctor.
4. At this point we would recommend eventual transition to oral suppression with alternating weekly courses of Moxifloxacin and Augmentin. This may be adjusted through his outpatient ID followup.
[Note from Elizabeth: Peter remained on Meropenem – fevers returned whenever he was taken off of it]

Past Medical/Surgical History:
1. Metastic hilar cholangiocarcinoma
2. Primary sclerosing cholangitis
3. Ulcerative colitis, not currently on treatment
4. Recurrent cholangitis 2/2 #1

Family History:
Unremarkable for any GI malignancies

Following his discharge from the hospital, Peter twice had outpatient paracentesis to drain excess fluid from his abdominal cavity. He passed away on August 11th, 2015 under at home hospice care.

If you would like information on the medicines Peter received while at Mayo, a more extensive writeup of an ERCP, Stent Extraction, and Single stent placement procedure he had while there, or the records from an ultrasound of his abdomen he had prior to his diagnosis, please feel free to message me. Excluding what is below, this is the totality of the records of his that I have.

Below, I’ve included pictures of Peter’s bloodwork from when he was at the Mayo Clinic in July as well as some bloodwork from that March, before he was diagnosed. (keywords I’m including so that people can find this post if they’re searching for these words: Hemoglobin, Hematocrit, Erythrocytes, MCV, RBC Distrib Width, Leukocytes, Platelet Count, Hematology AG CBC Aggregate, Hematology AG Auto Diff, Neutrophils, Lymphocytes, Monoctyes, Eosinophils, Basophils, Coagulation AG, Hematology AG Auto Diff, Coagulation AG Coagulation Tests, Prothombin Time, INR, APTT, Chemistry AG, Blood Chemistry 1 AG, Sodium, Potassium, Glucose, Random, Alk Phosphatase, AST (GOT), ALT (GPT), Bilirubin, Total, S, Bilirubin, Direct, Blood Chemistry 2 AG, Creatinine (w/eGFR), eGRF-Non African American, eGFR-African American, Albumin, BUN (Bld Urea Nitrogen), Chloride, Bicarbonate, P/S, Anion Gap, Enzymes, Amylase (S) )

@Gavin – Thanks for the kind message. Here’s the link to the trial we’re considering. We’ve just contacted Peter’s doctors to see if we can get PDT in a non-study setting. If not though, we’re going to finish the application process.

https://clinicaltrials.gov/ct2/show/NCT01755013?term=PDT+cholangiocarcinoma&rank=2

@kvolland – Thank for the welcome and for the recommendations – it’s so much better walking into a system with specific names and recs.

Dear Lainy,

Thank you for the warm welcome and for all your previous posts – I’ve read a good number of them in the past few weeks

Also, thanks for the suggestion to ask his doctor about replacing the stents. We’d heard they needed to be replaced at three months rather than six weeks to three months, so that’s good new info.

Unfortunately Peter can’t have Carnation Instant Breakfast because he’s on the Specific Carbohydrate Diet to control his Ulcerative Colitis. But, we have been making yogurt breakfast smoothies with lots of fruits and veggies, so it sounds like we’re sort of on the same wavelength here

Peter is being treated at Alaska regional, but his diagnosis was at Mayo (Rochester). We’re thinking of going back there to see if we can’t get his bilirubin down and/or to get some other treatments, but we’re also thinking of going to MD Anderson. There are no major cancer centers up here, so we have to travel for any sort of complicated treatment anyway. Do you (or anyone?) have any thoughts on Mayo vs. MD Anderson? Peter had a really good experience at Mayo, but we’ve heard MD treats more cholangio patients and are wondering if their radiotherapy division is maybe a little bit more aggressive.

All the best,
Elizabeth