Fernandaoliveira
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Hi, Johny,
I am sorry to know about your mom’s difficulties, and hope she will get better soon.
My mom also took Xeloda (I told her story here: https://cholangiocarcinoma.org/db/topic/introduction-from-brazil/), and experienced light, but uncomfortable mucositis.
Oncology nutritionist prescribed zinc carnosin, l-glutamin, beta glucan and a supplement called Biointestil for digestive aid, and she felt a lot better.
Another useful tip is sodium bicarbonate. My mom used to dilute a little bit in water to wash her mouth after brushing her teeth.
Organic coconut oil for mouth washing was also very soothing for her, as well as softer tooth paste (she loves Georganics and Weleda ones).
All the best,
Fernanda
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.
Take care!
Fernanda
Hello, Pat!
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.
Fernanda
