Adding Durvalumab to on-going treatment with Gemcitabine and Cisplatin

Hi Olis,

Thank you for your posting.

I can provide some information on the question you asked about bone mets.  Our patients have reported different treatments depending on the location and the problems the met is causing.  On the discussion board, we have heard from patients reporting having bone mets treated with radiation.  Some have reported minor surgical procedures to protect or strengthen the bone, e.g., placing a rod to strengthen a compromised leg bone.  If you search this board for “bone mets” you can find descriptions of treatments for bone mets from caregivers’ and patients’ perspectives.

It is good to hear that your treatment has been going well.  I hope you see continued positive results.

Regards, Mary

Hi Flipflopgirl,

Thank you for posting about your experience.  I am hoping someone(s) in our community can address your question.  Also, if you have not found this group yet, there is a Facebook group involving Cholangiocarcinoma patients who are being treated with immunotherapy and targeted treatments.  Since our cancer is rare and these therapies are relatively new, it can be hard to find other patients and caregivers who have experienced recently available treatments.   Below is information on the Facebook group.

Take care, regards, Mary

https://www.facebook.com/groups/CCTargetedTherapy/

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.

Hi Jjet65. It’s wonderful that you’re having great results with GemCis. My husband is also stage 4 (nodes in his lungs and pericardium, as well as mass on the caudate lobe of his liver, so he was not a candidate for surgery). He was diagnosed with combined ICC and HCC, so he gets to battle cancer on both those fronts. He started GemCis in early Dec and discontinued it in mid-February due to it causing severe peripheral neuropathy pain. He already had peripheral neuropathy prior to cancer/cancer treatments, so it was no surprise that GemCis was going to aggravate his condition. However, in that short span of time, the 5.7 cm mass on his liver disappeared from view and the lung and heart nodes showed very low activity. An amazing result for him considering he wasn’t on GemCis for that long. About 6 weeks later at the end of March, he started immune checkpoint inhibitor therapy with (Opdivo (nivolumab) and Yervoy (ipilimumab). He is still receiving that treatment, although in the past couple of months he only gets Opdivo as per the recommended schedule. In June he had another PET scan and we learned that the great results from the February PET scan (after GemCis) were now even better! Still no sign of the liver mass. And the lung and heart nodes, in the words of our oncologist, look like they’re remnants of some infection/scarring rather than cancer… no real uptake activity was showing. So while I can’t speak to the efficacy/success of Durvalumab, my husband is having remarkable success with other checkpoint inhibitors. I’m happy you get to try Durvalumab and I look forward to reading about your experience with it. The Opdivo/Yervoy treatment wasn’t without it’s problems (it put my husband in the hospital with an adrenal crisis) but for the most part, he’s doing alright… close to his baseline, what he was this time last year right before we learned he might have cancer. Please do update us because I’d love to follow your progress with it and wish you continued success!

• This reply was modified 1 year, 7 months ago by Gap. Reason: needed more coffee before composing

Hi,

The reason why I asked your bilirubin level is that it is related to drug metabolism and liver toxicity. 0.5 mg/dl is within the normal range. I guess that’s why you received Gem/Cis in the first place. Adding Durvalumab is probably okay. Did you ever have elevated bilirubin or jaundice? That’s how most stage 4 patients found out CCA. What were your symptoms that led to your diagnosis? Is your CCA intra or extra hepatic? Did you undergo any surgery?

Jjet65 – What was your bilirubin level when you started the Gem/Cis treatment?