Walking The Road

Hello everyone – My name is Tilly and my husband, Peter (52), was diagnosed with CCA in March. I have been following the message board for many weeks now and have wanted to join but things were moving very quickly. I will apologize in advance for the length of this post but it seems as though the philosophy of this group is to share as much as possible both for feedback and to contribute to the pool of information. So here goes!

– Early warning signs in January when he felt a constriction in his chest and they ran all the tests for heart problems (blood tests, treadmill, etc.) and they said his heart was very healthy. The standard blood panel ordered by his primary doc was fine but in looking back, all his liver function values were at the top end of normal. In retrospect we think it was his bile duct starting to close with cancer growth.

– In February increasing nausea and dyspepsia, prescribed Pepcid. He was having dark urine and he mentioned it to his primary but the doctor suggested he might not be drinking enough water. Frustrating as a missed “catch” but ultimately it delayed diagnosis by maybe 2-3 weeks when…

– On the morning of March 1st he put on a white dress shirt for work and it was obvious to both of us that he was very jaundiced. So down the rabbit hole we went!

– Early March ERCP to place a stent and clear the jaundice. Late March a Spyglass ERCP for definitive diagnosis of distal CCA. Referred to a surgeon who recommended a Whipple. CA 19-9 in the 400’s. The hospital was very high volume for the procedure, basically one Whipple per week. And his surgeon (we loved him!) was the primary for 18 Whipple’s last year and scrubbed in on many more.

– Mid-April my hero husband endured a 14-hour Whipple. They were unable to do a pylorus preserving. I think the surgery went so long because he was strong and stable throughout and his surgeon was battling hard to get every bit of cancer he could. Unfortunately: he had tumor on his mesenteric artery that could not be removed. Fortunately: clean margins everywhere else and no lymph node involvement.

– Seven days in the hospital basically uneventful but for some scary opioid-induced delirium on post-op day two. Once they pulled him off the heavy drugs he did fine on IV Tylenol for the rest of his stay. We went home with a feeding pump (off after two weeks), a surgical drain (pulled after 25 days at home), and learning to manage his diabetes with insulin. The surgeon feels like he shouldn’t remain a diabetic but we’ve decided it’s not our biggest problem. CCA is our biggest problem. He is now nine weeks post surgery and he’s kind of the poster dude for super recovery from a Whipple but he had the advantage of being relatively young and in good health other than the 1,000-pound dragon in his biliary tract.

– When Peter was about six weeks post surgery we had a consultation with a UCSF Cancer Center gastrointestinal oncologist (Margaret Tempero). We got this appointment much quicker than we had expected. We couldn’t really call it a second opinion because we hadn’t actually had formal staging done or the referral to an oncologist at our hospital. Dr. Tempero outlined the Gemzar/Cisplatin first line treatment and said we should have the tumor tested for Micro-satellite instability (which she said our provider should cover) as well as genetic testing/molecular profiling (which she said our provider would probably not cover). We opted to pay for testing through the UCSF 500 Cancer Gene Panel (vs. Foundation One).

– There was some debate amongst his care team/hospital tumor board about whether he had gall bladder cancer that spread to his bile duct or bile duct cancer that spread back to his gall bladder. But his oncologist has said it’s all kind of academic because the treatment protocol is basically the same. So he’s either Stage IV gall bladder or Stage IIIB distal bile duct.

– Early June we met our oncologist and, after he had a chance to strategize with the other gastro-oncologists in the group, they recommended the SWOG S0809 protocol (Gemzar/Xeloda; 21 day cycle; 4 cycles; then Xeloda and targeted radiation of the tumor bed for 4-6 weeks). We do understand that most of the patients in the SWOG protocol had either completely resected cancer (R0) or microscopic traces of cancer (R1) and Peter has visible tumor (R2), but we felt that our oncologist went through a good process in reaching this recommendation and we are on board for trying it.

– Baseline CT last week showed no metastasis (praise be!); CA 19-9 at 89; Micro-satellite instability didn’t swing our way for going on Keytruda (I had my hopes high on that one).

– Started chemotherapy this past Wednesday and “so far, so good” as Peter has been saying.

If you’ve read this far, thank you for reading this far! I will do my best to keep the community updated on how things are going for us. In following this board as a guest for the last few weeks I have been so impressed with the folks who post to the site. Survivors, caregivers, and surviving loved ones have shown remarkable bravery and compassion, and given caring advice and guidance. I’m sorry that my husband and I have been detoured onto this difficult path but I was glad to find you all on the road. Blessings and thanks to everyone!