Haticeaks

Dear all,

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?

Thanks.

-Derya

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.

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?

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.

Best regards.

-Hatice

Hi,

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?

Best regards.

-Derya