September 18, 2018 at 8:53 pm #97531lilitmParticipant
Dear Laura, I’m so sorry for what you’re going through. You are so young!! I am at a loss for words…
If there’s anything I’ve learned from our experience than can help, please don’t hesitate to ask…
The most important thing I would say is to ask your doctors to please send a sample of your tumor tissue for genomic testing ASAP (like at Foundation One, or MSKCC where they’re doing this testing for free for cholangio patients). If you have targetable mutations or immunotherapy indicators (ask to test for PD-1/PD-L1, MSI, TMB, DNA MMR…) – then maybe you will respond to targeted treatment or an immunotherapy trial.
Can you ask if the goal of your chemo is eventual surgery? Are there any liver-directed therapies (Y-90, TACE, ablation?) you could do?
My dad was on Gem/Cis for 11 months with stability/slight shrinkage (he also used cbd oil, THC (vaporizing the pure plant), probiotics, recommended supplements like vitamin D and coriolus, acupuncture, ginger for nausea, healthy plant-based diet, exercise, talk therapy and journaling, and any de-stressing we could think of like comedy…) before a scan showed progression and he had to switch to Folfiri.
He was on Folfiri for about 3 months but it didn’t work and then he needed a biliary stent. At the end of June 2018, he began a clinical trial at the NIH in Bethesda, Maryland – using immunotherapy (2 checkpoint inhibitors: durvalumab and tremelimumab) and ablation, in the hopes that the ablation will release neoantigens that can be recognized by the primed immune system. The first scan in Aug was stable and we are hoping for even better in the October scan.
Where are you being seen? Can you get 2nd opinions from the cholangio experts recommended by this foundation?
I also read the book Radical Remission and try to apply the 9 factors to my dad in some way. Sending you all my wishes for healing, and lots of love
LiliSeptember 18, 2018 at 4:38 pm #97529vtkbParticipant
Laura- I’m sorry to hear that you’ve been diagnosed, but happy to hear that the chemo is working. I know when Kathy (my wife) was first diagnosed I spent a lot of time searching all the posts on this forum for any hope/posts of people who were on the younger side who were also battling this disease. Kathy herself joined the facebook group for cholangiocarcinoma patients, and I suspect a lot of members who used to post a lot here now instead post there more often. If you havent already, you may want to join that group too and ask some questions there as well as here. You can search on this website for other people’s stories and also for specific keywords to help narrow down all the posts to whats relevant to you. I found the general discussion and survivor stories sections the most informative, and then ventured out to the other parts of this website. I know there were a couple of people who responded to kathys initial posts that gave us a lot of hope. I’m not sure though if some patients stop posting here once they get better or not (for instance I dont think kathy has posted here in a while, but she is active on the fb page). I also hope you have a strong support system in place too, and let them help you out as much as they can.
It wasnt addressed in your post, but have you had any biopsies or genetic testing of the tumor? If not, I would highly recommending talking to your oncologist about it. It seems the future of cancer therapy is attempting to target specific genetic mutations of your tumor. Good luck,
billySeptember 17, 2018 at 9:22 pm #97523bglassModerator
Welcome to our community. Loving your display name and picture.
Your current treatment, gem-cis, is the workhorse regimen for our cancer. It is great to hear that it has produced some good results for you so far.
There are other chemo combinations that your doctors may recommend should the gem-cis someday run out of steam. There are also new treatments in development that are available through clinical trials. If you read through the patient stories on this website, you will get a feel for different regimens patients have pursued.
There are a lot of resources on the Cholangiocarcinoma Foundation website that you may also find helpful.
Since this cancer is a rare one, it is recommended to be treated or have guidance from a major cancer hospital with cholangiocarcinoma experience.
Please send any questions or concerns our way, and stay in touch.
Regards, MarySeptember 17, 2018 at 8:21 pm #97522ShortcanuckParticipant
Dear Laura – I just wanted to reach out and say hello back. I’m so sorry you’ve had this diagnosis- and glad to hear you’ve had some improvement. I hope you have a good support network – don’t hesitate to reach out here if you need to chat. Stay strong❤️September 17, 2018 at 8:08 pm #97521Tumor_tiffany_mustdieParticipant
Hello every one! Well, my name is Laura, i am 28 y.o and I was diagnosed with stage IV cholangiocarcinoma with tumors on my liver n somw on the lymp nodes. I was diagnosed on June and lets just say my life did a full 360. It didnt fully hit at first but now it’s finally sunk in. My last CT scan showed two of the bigger tumors on my liver shrunk by 2cm n there has been no change on the other ones. I have faith that I will get through this. What are some alternatives that have worked for you guys? Im undergoing chemo (gemcitabine and cisplatin) n cbd oil. Anything else I should be trying?
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