Gap

Lynn, my husband was diagnosed a year ago. CT scan in mid-Oct 2021 showed what the radiologist determined was “favored to reflect cholangiocarcinoma.” Biopsy confirmed it in late Nov 2021. PET scan showed it was Stage 4 — nodules were found in his lungs and near his heart in the mediastinum. Later, in the winter of 2022, suspicions of combined hepatocellular carcinoma and intrahepatic cholangiocarcinoma were locked in as an updated diagnosis.

One reason (of many reasons) my husband wanted to keep it a secret was that some well-meaning friends/relatives can be very upsetting. We know a man who beat a stage 4 cancer and he told us how at the beginning, and then again if he’d had some difficult updates to his condition, he’d get phone calls from people who would turn the conversation into how traumatic it was for them to hear the news, as they were sobbing and carrying on… expecting HIM to console THEM. And then, of course, the people who “helpfully” told him about the cousin of the friend of the guy at the gas station who had some very extreme and dire outcome from something similar, so “omg,” they “know how difficult this must be for you.” My husband wanted to avoid all that since he was having a hard time absorbing the shock of the diagnosis back then and just one thoughtless comment could have easily haunted his thoughts forever. He was too emotionally and psychologically fragile to share his news. Now I think he hopes to ride this out and have no one know the better, as your husband had hoped he’d be able to do.

I’m happy to answer any questions you have about his treatment or experience so far (for his privacy I’ve chosen to be anonymous on this board). I’m not especially strong in biology, anatomy or any of the life sciences, to be honest. I’m learning the hard way through my husband’s diagnosis. He is 77 yrs old, turning 78 at the end of this year.

He did have a biopsy sample sent out for genetic testing, but unfortunately for him, due to “low tumor purity,” the sample wasn’t usable. His result was “no reportable alterations.” Not because there weren’t any, but simply because they didn’t have a workable sample. His oncologist even tried to have a second testing done with whatever was left of the biopsy sample, but still no results. We were very disappointed. It was bittersweet because the GemCis had knocked the mass on his liver out of existence so there was nothing to get another sample from. I mean, that’s wonderful news, right? But it also meant we couldn’t find a targeted therapy for him. And my husband chose not to pursue any clinical trials because he was not up to the travel they might require. His oncologist decided to put him on Opdivo and Yervoy. I assumed it was not just the best option, but also probably the only option for him. Someone with real knowledge can correct me, but I believe that Opdivo and Yervoy are PD-1 checkpoint inhibitors. What you’ll be taking, Durvalumab, is a PDL-1 inhibitor. (I don’t have any knowledge of the difference between PD-1 and PDL-1).  PDL-1 testing was requested on my husband’s biopsy sample, but there was insufficient sample left to do it. I guess we’ll never know how any targeted therapy might have worked for him, but his non-targeted therapy has been effective, so he’s justifiably happy with it. Durvalumab sounds like a great option… when will your first treatment be?

Back in the winter when my husband was on GemCis, and it started to really kick up his peripheral neuropathy, his doctor wanted to try eliminating the Cisplatin and have him try Gemcitabine alone, but my husband was just… done. He wanted to stop all treatments at first, actually. But once a few weeks had passed and the side effects had started to even out a bit, he decided he wanted to continue treatments as long as it wasn’t with cell-killing drugs. I understand not wanting to change your existing treatment when things are going well because I felt the same when my husband stopped GemCis. It was working beyond our expectations but he wasn’t in full remission yet. His oncologist tried to reassure us at the time by reminding us that these treatment plans/schedules are very fluid and they’re always based on a careful balance between adverse side effects and success. Sometimes you need to take your winnings and leave the casino, right? It was a little like that for my husband when he stopped GemCis. Hard to see him stop when he might be able to get just a little bit more of the disease knocked down. However, the gamble would have been even more extensive peripheral neuropathy pain. So yeah, sometimes a person has to gather up their winnings and walk away. And if your doctor has told you that you could return to GemCis treatments later, if needed, you should take comfort in that, eh? No doors are being closed. You’re just trying something new to see if it works better for you… successful but with less adverse side effects.

We had that rough spot in June when he developed adrenal insufficiency from the Opdivo/Yervoy treatment and landed in the hospital with adrenal crisis, so these checkpoint inhibitors aren’t without the potential for serious side effects, too. But all in all, it’s been a much easier experience than GemCis had been. Bit of a roller coaster ride… one month we’re dealing with diarrhea, the next month it’s extreme constipation. He’s a fall risk because he’s sometimes lightheaded or has muscle weakness (he’s recovering from a nasty fall right now, in fact). That definitely seems related to dehydration at times, so I’m on active Water Intake Patrol duty nowadays, ha ha. He has some confusion at times, but he does have other health concerns so it’s hard for me to know when something is related to his cancer and cancer treatments or if it’s something else.

I’m sorry that I don’t have any resources to suggest regarding genomic testing/genetic alterations. Since we didn’t get any actionable results I didn’t study up on it much. But everything I have found out has been through endless hours of Google searches. I look for academic publications with articles that are over my head but fascinate me anyway, simplified explanations on cancer organization sites, people’s posts on this board, etc. Gavin posts articles on this board every day it seems and he was kind enough to point me toward https://pubmed.ncbi.nlm.nih.gov/ for my own searches. Enter in a keyword or string of words and you’ll pull up numerous articles to read through (they can be a heavy read, but they can also give you enough information to expand your next Google search with some new keywords).

Hope to keep hearing from you… it’s lovely to chat with someone my husband’s age and who is also sharing a similar treatment course. Wishing you the very best.

Thank you for finding and posting this. I’m eager for any cHCC-CC articles as my husband has this combined cancer. His doctor has told us that predictions for treatment success and any time frames are going to be based on less data, and therefore less certainty, due to this cancer being more rare. So far so good for my husband as he did have great success with GemCis over the winter (no visible signs of the liver tumor and now only modest uptake in two lung nodules and a chest node). He’s currently receiving immunotherapy — Opdivo and Yervoy — and his biomarkers have dropped a bit in response. We’ll know more clearly how the immunotherapy is going when he has a PET scan in early June. Meanwhile, I scour the internet for more information.

Yes, my husband also had very disappointing genetic testing results due to a poor biopsy sample and limited quantity of it, too. The lab basically came back with nothing. And there was not enough sample to try a second time (the doctor attempted it anyway — good for him). That left us in an odd situation where we are thrilled that the tumor seems to have disappeared entirely after just 3-1/2 cycles of Gem/Cis, but now there isn’t any possibility of getting another sample for genetic testing. Additional update to his health: He also moved from intense activity (as seen on his last PET scan) in two nodules in his lungs and one near his heart to low activity in all. His doctor wanted this next phase to be targeted immunotherapy, but since the genetic testing was a dud for my husband, the doctor is going with ipilimumab and nivolumab starting this morning. Was told yesterday by the doctor that he’s “cautiously optimistic” that my husband will continue with his remarkable progress (his doctor seems quite jazzed by my husband’s response to treatment so far, haha). Considering he has advanced/metastasized chcc-cca, this is giving us a lot of hope and is re-energizing my husband, for sure. Fingers crossed that he tolerates the treatment well and has great, successful results.