January 18, 2019 at 4:18 pm #98026
Update on my mom.
RMI report is all clear and, for now, she is in complete remission. Another RMI with hepato-specific contrast agent will be performed in sixty days for follow-up.
My mom is feeling better and relieved, pain is slowly going away and her stomach looks almost normal. Blood tests are also normal.
We are aware that this beast is hard to beat and we must be watchful; however, every little triumph must be celebrated. We deserve good moments too!
Thank you for the support. Every experience shared here was so important for our understanding of this whole process, and we will be forever grateful.
FernandaJanuary 9, 2019 at 3:49 am #97986
I have read your story a couple of months ago; you are a true inspiration for all of us, and your story gives us hope for the future. It is really good to know other people experiences, and every information shared is very valuable.
The surgeon who performed surgery on my mom is a very experienced doctor on hepatopancreatobiliary surgery, including liver transplantation, with fellowship at Memorial Sloan Kettering and Samsung Medical Center. He also attends at Albert Einstein Hospital, in Sao Paulo, one of the most recognized in Brazil. We were so fortunate to find him in such a hurry, and my mom underwent surgery only three days after diagnosis. He gives us all the support we need, 24/7, even nowadays, almost eight months after surgery.
We have the pathology report and, indeed, it indicates signs of early cholangitis. My mom was asymptomatic during all her life, but it was probably the cause of the whole situation we are struggling with now.
This situation is really distressing for patients and their families, but after all I still believe my mom is a fortunate person. You must know that public health system in Brazil is ridiculous, and people usually die or have their health situation impaired while awaiting for an appointment or exam – this is so sad. Luckily we can afford a really good insurance, which has provided everything my mom needs, including hospitalization in a super high-tech ICU after surgery, and we could also afford the costs of surgery itself and give her a chance to live.
Lastly, a brief update on my mom. Blood tests are normal, and CA 19-9 is at normal range (18 U/ml), but her abdomen is still bloated and painful. Yesterday we took her to the radiotherapist to ask for some advice, since we believe that is due to radiation. A US was performed and confirmed the presence of liquid in her pelvis (about 205 cc), under the skin, but did not indicate any lumps or other suspicious stuff – which must be good.
I did not mention before, but my mom had to cope with two seromas along the way. The surgery was very complex and, according to the surgeon and the radiotherapist, maybe a stitch or staple could be inflamed. My dad will take her to another appointment today and we hope the radiotherapist gives some advice on what to do to relieve her pain.
MRI with hepato-specific contrast agent (Primovist) will be performed in a few days, and, again, I hope to bring good news.
Sorry about the long text and rusty English (practice missing!), but I feel relieved sharing our story with you.
Hugs to all, and take care.
FernandaJanuary 7, 2019 at 3:54 pm #97982herculesModerator
Hello Fernanda, I am sorry to hear about your mother’s difficulties, as you know, this is a complex surgery and experience of a surgeon that operates only on the liver and ideally specialty in cholangiocarcinoma, did she request a surgical report and a copy of the pathology report which would indicate if she has primary sclerosing cholangitis (PSC) . This is a condition of inflammation many of us cc patients have, which can flare up and be problematic for some, and not for others after resection surgery. I am a resection patient and I have PSC which was without symptoms for many years until recently (10 years) and maybe 3 years of issues . I am learning all the time what a sensitive thing a bile duct can be, and the balance of our digestive system and a natural diet . I found, over time that I was taking an anti-inflammatory medication for my arthritis and it seems to open up my bile duct (or rather I have problems if I stop taking it ) so this has worked for me for a few years now. I am not a doctor just a patient trying to share what has worked for me. I hope your mother finds what works for her, be well, PatJanuary 7, 2019 at 3:21 am #97981
Mary and Elodie, I’m grateful for the wishful thinking.
Bloating is still bothering my mom this week and we are concerned about it. Hope to bring good (or not so bad) news next week.
FernandaJanuary 6, 2019 at 9:57 pm #97980ElodieParticipant
thinking about your family and your mother, Silvia. My dad , 63, had a surgery on December 18, 2017. He also was on gemzar and xeloda last summer and he is still fighting today.
MRI is always a stressfull period, sending all our positive thoughts and prayers from Canada.
ElodieJanuary 2, 2019 at 4:28 pm #97959bglassModerator
Welcome to our community. From what you describe, your mother has been through a lot. Hopefully the treatments she has received will do their job, and her next scans will deliver positive news.
I hope you have been able to explore the resources for patients and caregivers on the Cholangiocarcinoma Foundation website.
Please send us any questions. Your taking the time to detail your mother’s story is greatly appreciated, and will be of help to other families facing this cancer. I hope you will keep us updated.
Sending best wishes your way that your mother feels better now that her treatments have been completed.
Regards, MaryJanuary 2, 2019 at 5:08 am #97955
I’m Fernanda, 35, from Sao Paulo, Brazil. My mom, Silvia, 56, was diagnosed last year, May 25th, with ICC, and we are struggling since then.
My mom is young, fairly thin, active and healthy, and always had a very healthy dietary pattern (plant based diet, mostly organic food, very low meat consumption). At the time of diagnosis she was almost totally asymptomatic (no jaundice, normal liver enzymes level, normal bilirrubins level, normal urine), except for a progressive pain in the upper abdomen. Took her to the ER and we had the bad news after a CT. We found a great surgeon and three days later she underwant surgery for resection (trissegmentectomy, Y-Roux, anastomosis and portal vein reconstruction) – apparently R0, and came home ten days later.
Removed fragments were sent to examination, and results showed microscopic margins, but clear lymphnodes and no metastasis at that time. FoundationOne test was “inconclusive”, according to the oncologist (I still need to do some research on that, since four mutations were identified).
She started chemo scheme (Gemzar + Xeloda) on August 4th, mild side effects at first, and one month later, started feeling uncomfortable, mostly because of abdomen pain. Blood tests showed elevated liver enzymes, and CT showed a bile duct stricture. Then she underwent ERCP procedure + metallic stent in September 20th. Surgeons suggested benign stricture due to major surgery, but warned it could be a recurrence. Biopsy was not recommended at that time, mostly because of the size of the remainin liver (around 30%).
Blood tests became normal again, PET-CT was clear and the oncologist suggested a new scheme, with Xeloda + radiation, which she started in October 23th and finished December 5th.
Xeloda + radiation scheme was fine, some side effects, mostly fatigue, but… finished the whole scheme, she experienced intense abdominal pain and bloating, and blood tests showed elevated liver enzymes and bilirrubins. We thought: here we go again. Took her to the hospital, called the surgeon (unfortunately the oncologist looked down on her and just told us that was due to the disease). After some exams and another CT, we and the surgeon were surprised to know that absolutely nothing abnormal had been found – no signs of recurrence, no stricutures, stent was fine. Liver enzymes and bilirrubins were back to normal some days later.
She still feels discomfort, pain and bloating, but after all we and the surgeon believe that she suffered late effects from radiation and chemo. Guess it could have been worse.
A MRI is scheduled to Jan 12th, and then we will define what to do next. Fingers crossed!
I am really glad I could find this amazing group of amazing people. Hope to bring good news soon.
And a happy new year!
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