October 23, 2022 at 1:47 pm #102090OlisSpectator
thanks for your feedback and recommendation! This helps. I will search over there.October 22, 2022 at 8:28 pm #102088
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, MaryOctober 22, 2022 at 2:32 pm #102087OlisSpectator
Hi Jijet65, Flipflopgirl
I just registered when I saw your posts. Living in Germany,getting treatments at Univ. of Frankfurt and can give you some feedback from over here.
I am getting Gem&Cis since 5 months. Durvalumab was added after one month.
So far my experience is positive: my ICC with with multiple liver metastases as well as lymph node metasatases got slightly better after 3 months staging. Some liver leasons got slightly smaller, none got worse and no suspicious lymph nodes any more.
But: during this time problems occured with bone metasatses that no one really tracked or had in focus. I got one in the arm and another one in the leg. After revising the older CT scans it seems that they were available since many months but no one really saw them. For me it seems that the leg metastase grew during the treatment mentioned above, but this needs to be checked further.
Regarding replacing Gem&Cis with Durvalumab: I just recently had a very interesting dicsussion at University of Heidelberg (www.nct-heidelberg.de), they explained me that they – per standard – try to replace Gem&Cis with Durvalumab in case of improvements after 2? cycles (need to confirm this). This is due to side effects. Hope is that Durvalumab can manage the situation. In case patients are worried about this change they would only remove Cisplatin and keep Gem.
Different to this my doctor proposed to continue with all 3 with no time limit until there are any issues with my blood. So far I am lucky and blood seem to be stable.
Is anyone aware of recommendations from publications regarding skipping Gem&Cis?
Btw, adding Durvalumab had no negative impact for me.
I am wondering if there are any clear rules for stopping Gem&Cis in the States or is this up to every oncologist? Moreover, is there any standard bone metastases tracking/staging? If so, with which method is this done. In my case there is no tracking so far. Would such metastases be removed by surgery?
Looking forward to any feedback.October 6, 2022 at 12:49 pm #102055
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, MaryOctober 4, 2022 at 11:22 am #102053FlipflopgirlSpectator
After receiving my diagnosis of recurrent ICC with resection not an option, my oncologist started treatment with gem/cis/durvalumab. We were able to get through two cycles and had to pause because of my creatinine levels getting too high and my platelets too low. My oncologist is concerned that the durvalumab might be adding to the side effects that the gem/cis are causing. Our plan was to do four cycles of gem/cis/durvalumab and scan and then continue on for six months or so with only durvalumab. We might have to go the targeted therapy route since I have the BRAF mutation after finishing my fourth cycle. I’m wondering if anyone has had any success with this course or my sane situation. Freaking out in Florida!!!September 13, 2022 at 9:18 pm #101985GapSpectator
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.September 13, 2022 at 7:13 pm #101984
I am sure happy to hear your husband has gotten such good results. The only immunotherapy I am at all familiar with is Durvalumab. If you don’t mind my asking, did genome testing find his tumor(s) had actionable mutations. My terminology may not be correct in the preceding sentence. I am trying to learn about this stuff, especially the genes and cells re malignancy. I ask because I figure I should keep track of other treatments for CC in case my treatment becomes ineffective. Today, with my oncologist and wife, we discussed what we had been looking into, transitioning to Durbalumab. Going to start it with next treatment – Durvalumab and Gemcitabine and drop the Cisplatin. Although the Gem-Cis treatment has been so effective with no serious side effects, it has been knocking down my immune system to where a change is warranted. I have some anxiety about changing from a treatment that is working so well, but this change seems like the best thing to do. As onco said, we can go back to Gem-Cis if need to. If you have any recommendation for a resource to learn about the biology re genes, I would appreciate it. I have been printing out materials from on line searches. I am 78 yr so am used to hard copy and going to the library. I am going to see what our local library has. I need to start with something basic; I never quite “got” biology. My wife understands bio pretty good so I can show her what I have and get help comprehending it. I have to add I like your reason for modification of your message. Please tell your husband I will be rooting for him to continue to have good results with his treatment including lessened side effects. Thank you.September 12, 2022 at 7:09 pm #101978GapSpectator
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!
September 11, 2022 at 5:38 pm #101975
- This reply was modified 2 months, 3 weeks ago by Gap. Reason: needed more coffee before composing
My symptom that led to discovery of the cancer was fluid retention in feet and lower legs. I had no jaundice or elevated bilirubin. The main tumor was blocking the intrahepatic bile duct and compressing the main portal vein. I had several endoscopy procedures to try to clear the bile duct, put a metal stent in the bile duct, and get definitive biopsy samples. The definitive biopsy sample was from bone in the spine. It was adenocarcinoma. There was no surgery. The diagnosis is adenocarcinoma of biliary origin.September 5, 2022 at 10:06 pm #101961MissingmomSpectator
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?September 5, 2022 at 9:15 pm #101960
Thanks for replying to my post. As you probably noticed, yours is the only reply, so far at least.
My bilirubin level shortly before chemo began was .5 mg/dl back in late Sep 2021. It was that about 2 1/2 weeks ago also.
Why do you ask about that? I don’t understand the bio and chemistry well so looked up the meaning of that test – glad I did because I thought it concerned a different aspect of the liver function.September 5, 2022 at 10:53 am #101958MissingmomSpectator
Jjet65 – What was your bilirubin level when you started the Gem/Cis treatment?August 22, 2022 at 10:42 pm #101935
I hope we hear from our community of any experiences adding Durvalumab to the standard Gem-Cis chemo treatment. You also may wish to send your question to email@example.com. The Cholangiocarcinoma Foundation advocates may have information they can share related to your question.
It is great news how well you have done with your treatment so far. I hope this continues.
Take care, regards, MaryAugust 22, 2022 at 9:53 pm #101934
I would like to hear from anyone with experience or looking into adding Durvalumab to the standard CCA Gem/Cis chemo treatment. That standard treatment has produced great results for me so far (10 months of treatment) with minimal side effects on my stage 4 cancer. My oncologist and I are discussing whether and how to add in Durvalumab. He is looking into it on his end with other oncologists. I would like to hear from anyone that is doing this or looking into it. I know it’s brand new, and as far as I know there’s no data for adding it to on-going treatment.
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