33 yo ICC WA state
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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 🙂
Hi Celeste,
It’s really nice to meet you. I was 34 when I was diagnosed with Stage 4 intrahepatic which was September of 2020, also with a BRCA2 mutation. I’m 36 now and it sounds like you’re dealing with a lot of the same issues I had when I first started gem/cis. I also had the high cell kill which was causing an artificially high CA 19-9 level. I also was dealing with a lot of under rib pain, which I still get sometimes. This always worries me but it doesn’t always seem to be linked to regrowth. I use a heating pad when I have flare up of rib pain. I bring it to work with me, and just relax with it at the end of the day. Since I stopped cisplatin (just on gem now) after my first round my levels really evened out. I’m stable and my liver levels are normal, and tumor markers really just dropped a lot. I’m hoping you’ll see the same stability after your first round is complete.
Hi Celeste,
I’m glad to read that your GemCis treatments are having an effect. I will be telling my husband about your rib/abdomen pains as he has indeed experienced that same side effect. In fact, it’s currently one of the main discomforts he’s feeling and causes some sleep issues for him. Because he has peripheral neuropathy (a pre-existing illness he was dealing with prior to cancer treatments), it’s sometimes hard to identify what aches and pains are due to PN and what might be from the chemo. He’ll find some comfort in hearing that he’s not alone in experiencing that symptom. I hope that goes away for you eventually or you and/or your doctor find a way to manage it. Initially, I was concerned that it might be due to pressure from his tumor… worried that maybe it wasn’t responding to treatment and was growing, or maybe a new tumor had developed… but since his recent PET scan showed no sign of the tumor mass (woo hoo!), I’m going to assume it’s a GemCis side effect. He also lives with a super low pulse rate (his normal rate is in the low to mid 40s) due to heart medication and so the mom in me wants to remind you to always stand up slowly and give yourself a chance to get oriented for a moment before you step away from your bed or chair, just in case you experience a little bit of lightheadedness. Cheers from CA and I hope to continue to read good news in your updates!
Hi Celeste,
Thank you for the update and for sharing your good scan news. Â I hope your chemo continues to keep your cancer in check.
I wanted to ask if your doctors have offered any explanations for your unsettling CA 19-9 result. Â I imagine that they will keep a careful eye on that for you. Â You mentioned more frequent scans, which sounds like a good plan.
Take care, regards, Mary
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 NHi Celeste,
Welcome to our community. Â It is great to meet you. Â I am sorry to hear about your diagnosis, and that you are experiencing some pain. Â I hope your doctors can figure out what is going on, and help you with the pain.
CA 19-9 serves as a sort of early warning signal. Â When the numbers move up, this triggers, as you report, imaging studies and other efforts to see what is going on. Â During chemo treatment, CA-19 can rise because the cancer is progressing but sometimes it can rise when the chemo is working because dying cancer cells can cause CA 19-9 to temporarily rise. Â The imaging studies will help your doctors determine if the chemo is still doing its job. Â From what you describe, so far your chemo has been working. Â Generally our patients start with gem-cis, and if it starts to lose effectiveness, they move to a different treatment.
Don’t worry that you might be overreacting.  I felt like having cholangiocarcinoma turned me into a hypochondriac, hyper focused on how I am feeling physically and raising all sorts of things with my doctors.  But you do need to do this (and not feel guilty about it).  We are not doctors and may not know ourselves what is significant and what is nothing to worry about.
While not very common, some of our patients have experienced heart-related side effects from chemo. Â So if you are observing anything concerning with your heart rate, be sure to discuss this with your doctors.
I hope you will let us know how your imaging turns out. Â Fingers crossed you will get positive news from your MRI.
Take care, regards, Mary
Oh! I forgot to mention that there is a hypothesis that the CA 19-9 numbers may be increasing because of evidence of scarring found on the liver from the last CT scan. I guess I just need to be patient and wait for that MRI to give some more answers.
I wanted to pop in and say hello, as I have been lurking on this website for a while now. I am a 33 year old female diagnosed with intrahepatic cholangiocarcinoma in August 2021. On a personal note my name is Celeste and I live in WA state. A tumor was found on my left lobe measuring 7.9 x 15.8 x 10.9 cm, with other numerable lesions throughout the rest of my liver. I have been receiving the Gem/Cis combo for treatment with a positive response so far. I have BRCA2 and BRAF mutations found from liver biopsy.
Despite a ct scan in December showing response to treatment, I have been having some unusual side effects. One day before the scan in November I noticed chemo left me feeling like someone beat me up, like I was bruised up underneath my ribs later in the day. This has been a pretty consistent pain I associate with chemo, so its not really new but has been steadily getting worse. I have also had some brachycardia develop after chemo treatments, with my heart rate slightly going back to normal on my recovery weeks. I was a bit scared a few weeks back because my average when I was sleeping was recorded as 43 bpm.
Recently, my CA 19-9 levels have been rising again. Before treatment started in September I was measured as having 115,066,000.0 H of CA 19-9 in 0.0 – 37.0 U/mL. At my lowest on 12/22/22 it was measured at 16,992.7 H. Over the month of January it has steadily increased back up to 413,513.8 H. My doctor ordered a CT scan to take a look at the extra pain with increased CA 19-9 values, and it showed no new cancer growths, with some lesions even decreasing in size. I am scheduled to get an MRI next week to get a clearer picture of what’s going on since my CA 19-9 numbers are going up. I am obviously scared that the chemotherapy has stopped working and now my aggressive cancer cells are just taking up all the space. Despite all this, my bloodwork is relatively normal (as normal as bloodwork can be on chemo I guess).
Has anyone else had any weird experiences with CA 19-9? My doctors also seem to find my pain from the chemo to be a little strange so I was curious if anyone has experience with that either. Also that brachycardia bit. If anyone has any insight I would love it because otherwise I will spend the weekend wondering and not being able to ask my doctors about it. I often question myself if I am overreacting about something or if I am not reacting enough, and I have no one to talk to about it so here I am!
Thanks for taking the time to read!
Celeste N
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