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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.
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?
-DeryaJanuary 9, 2020 at 8:52 am in reply to: How to manage extreme sensitivity to smell during treatment #99538
Thank you Mary for your response. Do you have any other suggestions regarding food? For example, any soups, any vegetables, any snacks, etc that were working for you during your treatment. I know everyone is different but based on the suggestions I can try different things. Since I don’t want to eat, nothing comes to my mind when I enter the kitchen to prepare something. Someone has recommended me raw carrots, I hadn’t thought about it, I tried, and I really like it. Do you remember anything that you were eating and were not uncomfortable with it?
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.
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?
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?
Thanks Mary and Gavin for your responses. I have used some medication which took a long time to help me. It is better now but not as my oldself.
Thank you for your response. I have just finished the first cycle of Gem-Cis chemo regime. It wasn’t as bad as Folfirinox but still had some side effects (tiredness, nausea, etc) I hope that things are good with you too.
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.
-HaticeAugust 2, 2019 at 10:47 am in reply to: 2019 Cholangiocarcinoma Foundation Annual Meeting Videos #98936
How does someone attend to this conference? Is there a registration or any fees?
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.
I am Hatice’s daughter and just wanted to give an update regarding her. She decided to have the second surgery which happened last Saturday (July 13). In the CT scan, there were 2 and 1 suspicious masses in her liver. During the operation, the doctors saw that one is actually three small tumors next to each other. Overall, they were able to resect all 6 tumors and sent them to pathology. We still haven’t heard about the pathology result. She is still in the hospital and they plan to discharge her tomorrow. She is very tired and having some pain. Also her appetite is too low. She is saying that I am very hungry but I cannot eat. Has anyone had the same complaint? If so, what did you do to overcome that?
Thank you for your response. Right now, I am in a situation where I need to make a critical decision. The surgeon who did my operation is negative about having another surgery because of these two lesions. He thinks that my cancer is aggressive and if it comes again will they always do an operation? My oncologist recommended me to get other surgical opinion. I saw 3 additional surgeons. Two of them said that surgery could be an option but RFA+CyberKnife could also be tried. The other one strongly suggested surgery. When I spoke with my oncologist he stated all the risks of the options and left the decision to me. I have an appointment for RFA this Thursday and I have to make a decision whether I want surgery or not. How are the others experience who had consecutive liver resection? One part of me does not want surgery, but the other part of me wants to give a chance. I am very confused and don’t know what to decide.