CelesteN
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Hi again!
I wish I could be more helpful about providing input about your biopsy, and I am sorry you haven’t had successful ones in the past 🙁
I just wanted to jump in since you said it was your first time posting to the discussion board. My husband has been active in the caregiver support group and he finds it very helpful, its a great source of information for us. I actually signed up to start participating in the patient support group after watching the annual conference this year too but I haven’t attended any meetings yet. If you haven’t tried out the patient support group yet you should try out the next one! Then if you don’t get your question answered here someone might have an idea at the meeting.
Are you going to try another biopsy or is the surgical one the best option at this point?
I want to thank everyone who has posted here to give their thoughts and input. It really gives me a new perspective and brings me hope, so I really value the time and effort you put into sharing your experiences! Its a relief to know that I am not alone with my symptoms (although of course I don’t wish it upon anyone) and high CA 19-9 numbers.
I’m typing this up as I am in chemotherapy right now, starting my 9th cycle of gem/cis. I am scheduled for another PET scan to be done in mid April, to keep an eye on an active lymph node that was seen on my last scan and to see if it offers anymore clues about the high tumor marker numbers. Overall though my scans have been looking better than they were before, and my cancer burden has definitely decreased. My high tumor marker numbers are still strange of course, and my doctors explained that it could be from a number of different things like infection or inflammation but its still quite a head scratcher.
Thrashm20, I am so surprised to meet someone near the same age with the same mutation and disease! Its nice to meet you 🙂
Hello!
I thought I would give an update for anyone curious about what happened after my original introduction. My doctor ordered an MRI and PET scan because of my worsening abdominal pain and steadily increasing CA 19-9 numbers. I recently got the results and recieved the good news that the gem/cis chemotherapy still appears to be working. Since beginning treatment on 9/22/21, my main tumor has shrunk from 15.8 x 7.9 x 10.9 cm to 10.8 x 4.8 x 5.4 cm, with many of my smaller lesions in the liver getting resolved. The PET scan did show some activity in a lymph node not previously seen, but mostly showed “positive effects of interval chemotherapy but with residual active cholangiocarcinoma present.” Overall, its looking way better than it was before. Still quite a bit of cancer of course, but I started with a lot.
The morning of my PET scan, I got the latest results from 2/7/22 that my CA 19-9 had shot up to 47,348,400.0 from 413,513.8 just the week before. Its almost just as high as it was before I started treatment. I just don’t know why the tumor markers are rising when the scans are showing a different story.
I have two very good doctors taking care of me and who will be keeping a close eye on me. I am supposed to take care of myself and was told to watch for signs of fevers and chills. We also plan to do scans a little more frequently to keep a close watch on what is going on. Obviously I am concerned about the high tumor markers, but there isn’t really anything I can do about it is there? I am very thankful with how much healing has happened already. We are going to go ahead and complete my 8th cycle of gem/cis, and I was assured that I do have several other treatment options available to me if we need to do anything different. I guess I will see what happens!
Thanks for reading and take care 🙂
Celeste NHello Mary,
Thanks for taking the time to talk me through the things I have been worried about. Its very nice to meet you too 🙂 I am sorry to hear that you also have cholangiocarcinoma, although I admit its very nice to talk to someone who has it because I haven’t officially met anyone with it yet. I will be sure to keep my doctors informed about my side effects.
I have had discussions with my doctors about targeted therapies, especially after navigating this website and seeing the importance of it. Technically the gem/cis combo is a targeted therapy for me since I have the BRCA2 mutation, and I was told I am more likely to respond to chemotherapy with the mutation. With the success of my last scan, both doctors agreed to proceed with the current treatment plan of attacking with chemotherapy. My understanding was that when chemo stops working we will attack using the BRAF mutation.
I hope I will get some more clarity about what is going on over next few weeks. I think deep down I am so worried that the high CA 19-9 numbers indicate that treatment stopped working and I came here looking for some reassurance or hope. Even if it does show that treatment stopped working, I’m learning that that’s ok and that this disease is bound to take me to some scary places sometimes. I have to remember the things I am grateful for.
I hope you are doing well in your journey Mary!
Take care,
Celeste N
