May 20, 2020 at 9:30 pm #100119
Thank you for your note. Your news of your mom Hatice’s passing was unexpected and deeply sad for our community. Please accept my condolences and prayers. Hatice showed great courage in pursuing her treatment in face of an aggressive cancer, with a determination that was inspiring to all of us. Your steadfast support for her as she battled this illness no doubt made her journey easier, and I hope you and your family find peace and comfort in the next days and weeks.
Take care, regards, MaryMay 20, 2020 at 3:24 pm #100118
My mom unfortunately passed away last Wednesday, and I don’t want to believe it…
Last few months were really painful for her. In March, she was getting prepared for radioembolization, but it was cancelled due to the quick spread of peritoneal mets discovered at PET. Then, she immediately started Abraxane, which made her to get worse more quickly. Anyways, the cancer didn’t stay under control after a bunch of things (two resections which were two months apart, nearly 10 cycles of Folfirinox, various cycles of Gem-Cis, Capecitabine, etc.) The most painful thing for me is that she fought for 20 months and we didn’t have a moment where she was cancer-free even for a small time period.
I send my best wishes to everyone…Thank you all for your support.March 8, 2020 at 12:01 am #99881
Thank you for the update on your mom. It is good to hear that her cancer is under control with her current treatment. I hope the pain management help she is receiving is working well.
We have had a few patients who were treated with radioembolization whose stories are posted here. If you search “radioembolization” or “SIRT” or “Y90” you can find them, as well as studies on this treatment that Gavin has posted. This treatment seems to produce positive results for many patients.
Chemotherapy seems to be the most common treatment for advanced cholangiocarcinoma with peritoneal metastasis if HIPEC is not recommended. Advanced cholangiocarcinoma is also sometimes treated with targeted treatments or immunotherapies. These treatments are generally only available through clinical trials and may be effective for patients with specific genomic defects or mutations discovered through genomic profile testing. Your mom had mentioned having this testing – did it identify any actionable mutations? I found some references to surgery for peritoneal metastasis but they seemed to refer to cases where the cancer location was causing blockages.
From what Hatice has described, her doctors seem to be proactive in identifying treatment options. I hope her cancer continues to stay under control and that radioembolization produces good results.
Regards, MaryMarch 5, 2020 at 10:43 am #99872
I want to give an update regarding my mom. She has been fighting with ICC for 18 months. Last November, they found out peritoneal carcinomatosis (in addition to one liver tumor) and confirmed with biopsy and PET. My mom started Folfirinox in December and got a CT scan after two cycles. It looked like peritoneal involvement is stable, the tumor appeared in November has shrinked, but two new liver tumors have grown. The oncologist evaluated that the cancer is under control and they can do a local operation to the liver tumors due to their locations. The surgeon who did her last resection didn’t recommend a surgery. So now my mom is getting prepared for radioembolization. She is at pain medication right now, and I am a bit concerned that the cancer might spread at the moment since she is not taking any cancer-related treatment right now (due to waiting for radioembolization). I actually have two questions:
– How are your experiences with radioembolization?
– I don’t know what will happen to peritoneal carcinomatosis. Last time, the oncologist said that it is not at the level for HIPEC etc. But it is also known that chemo is not very effective for that. Are there any alternative treatments for minor peritoneal involvement?
-DeryaDecember 3, 2019 at 6:14 pm #99394
While not qualified to speculate about medical matters, your recounting of your radiology consult reminds me that diagnosis and treatment planning for our cancer is complex and usually requires a team of doctors with different specialties – oncologist, radiologist, surgeon, pathologist, and possibly others. It may be just that the radiologist was not comfortable presenting next steps til he could consult with others.
Please do not assume the worst until you hear something back from your doctors with a definite assessment and plan. I know it is hard not to worry, but for now you can safely let your doctors think through what they observe in your tests and scans, which will no doubt lead to a plan of action. Your recurrence was caught early, and I am hoping the next phase in your treatment stabilizes the cancer.
Take care, regards, MaryDecember 2, 2019 at 1:06 pm #99391
Thank you for your response Mary. Yes, we have already sent some sample tissues from the surgeries for genetic testing. Hopefully, we will hear back from it in the following weeks.
Today I also saw my radiologist and had an ultrasound. He didn’t say much though. He took some sample from the abdominal fluid and said that they will investigate what causes it. He didn’t say much about the lesion in the liver. When we asked about RFA (initially they were thinking about the RFA + chemotherapy, but my oncologist then requested additional tests such as PET, biopsy from the fluid), he said that he doesn’t consider RFA at this point. Based on the test result, he and my oncologist will talk and let me know about the results. But right now, I am so worried that something wrong is going on. What could be a reason not to consider RFA for a liver tumor? Can peritoneal mets cause ineligibility to RFA? Or do they suspect from infection or something else? By the way, he also asked me about which of my recovery from surgery took longer time. I said the second one which was 5 months ago. It is like a puzzle, and I cannot interpret anything based on this conversation.November 26, 2019 at 6:20 pm #99365
It is nice to hear from you, but I wish you had gotten better news from your scan. It sounds from your reports that you have good doctors so I am hoping you will very quickly have a new treatment plan to address the recurrence.
Cholangiocarcinoma does sometimes turn up in the peritoneum. Our patients usually report being given systemic treatments (e.g., chemo) to address peritoneal recurrence. A very small number have reported being sent for a treatment called HIPEC, which involves directly bathing the peritoneal area with chemo, sometimes after surgical reduction of the cancer implants found there. HIPEC is a severe treatment, and not very commonly used for cholangiocarcinoma but I mention it in case it is something you want to ask your doctors about.
Have you had genomic profiling done? There may be additional treatments available through clinical trials if your profiling showed a genomic defect for which there are new drugs now in testing. There is information on the Cholangiocarcinoma Foundation website about the testing if you are unfamiliar with this topic.
From what you describe, the new recurrence was found very early, your doctors are on it, and you are in generally good health. These are all positives that you can bring to the next round of treatment which hopefully will bring the cancer under control.
Take care, regards, MaryNovember 25, 2019 at 10:33 am #99358
Hi everyone, after my two surgeries and last chemo treatment, the last CT scan shows 1.5 cm lesion in my liver and minimal abdominal fluid (with a suspicion of peritoneal carcinomatosis). I guess I will have additional tests (PET, ultrasound) and so on. I am just wondering if anyone has dealt with peritoneal carcinomatosis with intrahepatic cholangiocarcinoma?September 21, 2019 at 7:44 am #99099
Your CA 19-9 and CEA results were not what you wanted to hear after two surgeries and chemo, but please hold judgment on what this means til you see your oncologist.
Tumor marker tests are more difficult to interpret during treatment because for some patients, an effective treatment itself can cause tumor markers to initially rise before subsequently falling. (In other patients, an effective treatment can result in their reducing right away.) In my own case, after surgery I had both chemo and radiation, and my CA 19-9 more than doubled from what it was just after surgery. It drifted down afterwards.
Generally, if doctors suspect a possible recurrence, they will look for other evidence for example by ordering scans. It can take up to nine months or so after a rise in CA 19-9 for a recurrence to be visible in a scan, so it may take your doctors a little time to figure out what is going on.
Patients are usually reminded that there can be non-cancer reasons for tumor marker test results to fluctuate. I had a personal experience with this earlier this year when I had both a higher CA 19-9 and a scan finding related to colitis (essentially a bout of stomach flu). I learned that colitis is a benign factor affecting CA 19-9. My CA 19-9 has since returned to its prior level so hopefully that was the cause.
In sum, a higher CA 19-9 (or CEA) is not welcome news but the number alone does not tell us much. Your doctor will work with you to figure out the cause and then take action. Please don’t worry too much until you hear from your oncologist.
Regards, MarySeptember 20, 2019 at 9:49 am #99098
After 6 cycles of Folfirinox followed by 2 resections and after that 1 cycle of Gem-Cis chemo, I had blood tests today and it looks like my CA 19-9 is 87.9 (which was 55.6 after the second resection) and CEA is 26.7. We will show these results to my oncologist and will see how he wants to proceed. I am sad and very anxious that there is recurrence. Has anyone had persistent elevated CA 19-9 for long years after diagnosed with ICC?September 7, 2019 at 6:46 pm #99054
It is good to learn you are recovering well from your second surgery and tolerating the chemo reasonably well. I hope you continue to feel better and have good scans ahead. There always seems to be anxiety with scans, but they are a necessary part of keeping this cancer under control.
Take care, please stay in touch, MarySeptember 5, 2019 at 1:45 pm #99041
It has been a while to write here. After having my second resection in July (the first one was in May), I have been feeling better just now. I have lost too much weight and I still have pain. In my last scans, they didn’t see any tumors. I started my chemo regime (Gem-Cis) and just finished the first cycle. We will see how long my oncologist will continue that. I want to feel better now but I am anxious about the next scans and how this will continue.
-HaticeJuly 17, 2019 at 9:39 pm #98879
My experience after surgery was similar to what Hannah reports. A liver resection is a major re-plumbing, and it can take a while for the digestive tract to settle down and for patients to adjust to the new normal. Also, my recollection is that recovery from the anesthesia and the post-surgery pain medication also affected my appetite. The usual recommendations for small meals, avoiding hard to digest foods and supplementing with juicing or protein drinks are helpful. If there are severe disruptions to eating, this should be reported to the surgeon. My recollection was that it took maybe three weeks to get back to semi-normal eating, and I was not eating much at all in the first week after surgery.
I hope your mom recovers quickly from her surgery and is feeling better.
Regards, MaryJuly 16, 2019 at 7:39 pm #98869
My mom lost her gallbladder in her first surgery. As I mentioned before, she had her second surgery after 2 months of the first surgery. What she says is that she gets full very quickly and none of the foods seem appealing to her. She constantly feels hungry but doesn’t want to eat anything. I am really seeking any advice/tips to help her overcome this appetite issue.
Thanks for your response and best wishes to your mom, too.
-DeryaJuly 16, 2019 at 7:22 pm #98867HannahaParticipant
So glad to hear that your mom had her surgery and hoping that you get good pathology results soon.
Regarding getting her back towards a more ‘normal’ diet and intake of food, it is a very slow process after this kind of surgery. After my mom’s resection in February (in which she lost her gallbladder – not sure about the status of your mom’s but losing a gallbladder really messes with your ability to digest things), she ate nothing at all for several days, and then was limited to a few bites here and there for several weeks before she really got back to anything like a normal-sized meal. If something sounds tasty, try it. Be wary of things with lots of fat or lots of fiber, as these both require more work to digest. If she is able to eat 2 or 3 bites of something, consider it a success and return to the project after a couple of hours. With a little luck and a little time, she’ll be having a half dozen bites, and then more. I know that others have had success with nutrition drinks and similar. My mom thinks they’re revolting, but if your mom is more open-minded about them, they might be a good way to ensure she’s getting the nutrients she needs.
Good luck and best wishes for your mom’s recovery!
- This reply was modified 12 months ago by Hannaha.
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