Chemo/Radiation
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Hi Pongee,
Welcome to our community. It is great to hear that your father was able to seek treatment in Hong Kong. We have had previous board members treated in Hong Kong although none recently.
The answer to your question is a bit complicated. When I had chemo and radiation after resection surgery, my CA19-9 did nearly double although it started from a lower point than your father’s. What I recall being told is that treatment can cause the tumor marker to temporarily rise, but rising CA19-9 might alternatively reflect progression of the cancer. I had to wait for my scans to see which it was, which was unsettling. In my case, the increase in CA19-9 was thankfully due to treatment as the number drifted back down when treatment ended. So your father’s doctors’ advice to wait for the scans is similar to what I heard from my doctors.
I hope your father is feeling well as he pursues treatment, and that his next scans bring good news.
Regards, Mary
hi! New here and from the Philippines. My dad was diagnosed with hilar cholangiocArcinoma back in August and it has been a whirlwind. Fast forward we are now in Hong Kong receiving treatment as this disease is literally unheard of and given a death sentence in my country. My dad being a fighter, is fighting for his chance of survival getting treatments here in HK during the pandemic. We had rt and chemo treatments (xeloda) for our first cycle. My question is, has anyone experience elevated ca19-9 levels right after treatment. My dad’s previous levels were 200 and jumped to 400 after treatment. This scares me. We are due for scans in 2 weeks time and the doctors told us to wait for those results. Any experience on this? Your thoughts are greatly appreciated. I am so happy to have come accross this organization!
Hi Mischk76,
Welcome to our community. I am sorry to learn about your mother’s diagnosis. There are a lot of good resources on the Cholangiocarcinoma Foundation website for newly- diagnosed patients and their caregivers – if you haven’t seen these, please take a look.
It is really important to get treatment advice from a specialist experienced in our rare cancer. I came to appreciate how rare this cancer is when I started asking my doctors how many other cases they had treated. Outside of the specialists, the answers ranged from “none” to “not many” to stammering and changing the subject. In my case, my day to day care has been in the hands of a general oncologist but the treatment decisions have been made by the specialists.
I am a patient, not a medical provider, so cannot give medical advice. I can say that it is certainly possible to have chemo and radiation at the same time because I had that myself. Chemo is often used to boost the effectiveness of radiation. Some of our patients who had cancer spread to a rogue lymph node or who had bone metastasis causing pain have reported having radiation while they were receiving other treatments. That said, each patient’s case is different, so what is best in your mother’s specific case should be discussed with her specialist. If she has qualms about what is proposed, an option to consider would be to seek a second opinion from another specialist.
The Cholangiocarcinoma Foundation website has a specialist map that can help you find specialists.
Please stay in touch. Take care, Mary
Hello! Like so many of the rest of you, I’ve joined this group because my Mom was diagnosed a couple weeks ago due to a large tumor found on her liver. I’ve been reading and reading (and reading) for the past two weeks. Lots of great advice here which has helped us a ton. My mom was diagnosed w/ cancer. They haven’t given a definitive bile duct diagnosis but “think” it may be. We had seen a general ONC but got a 2nd opinion from a specialist. Night and day difference as far as options. The specialist suggested radiation for the hip and chemo for the cancer in the liver. We understood that to mean at the same time. The general ONC said they don’t do the treatments at the same time. I told her to call the specialist back to get clarification but in the meantime, I thought I would post here to see if anyone had an opinion?
THX in advance for your feedback!
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