New member, Mother has been fighting 5.5 years
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Never give up hope! Almost 6 years for me……so much hope coming in the future research and treatments. Thanks for posting and giving others hope….we are all in this together.
MelindaMaria-
Thanks for finally posting and officially becoming part of our family. I know when Mom was diagnosed, finding all posts – especially non-surgical patients- who were having longer survival gave come hope.
Good luck Kathy!
Best wishes to both of you-
Catherine
Maria and Kathy….agree with Katrina and Lainy. Advances in treatment and research (finally) are reaching our patient population as well.
Hugs,
MarionHi Maria,
There are more reasons now than ever to have hope. I’m still here 6 years later. A woman I know has beat back her liver metasticized cancer for over 20 years — utilizing the next newest thing that came along. Keep learning and keep your oncologist on his toes!
Dear Kathy, I wanted to wish you the best of luck on tomorrow results. Just keep remembering that new treatments are coming along all the time. We certainly did not have even 8 years ago what we have today. Please let us know about your results as we truly care.
Thanks so much for posting! I was diagnosed with a very large tumor in January 2015. I’m about to get results from my scan 6 months post-op tomorrow morning. I know that my chances of truly beating this are almost zero, but I’m hoping to get as much time as possible as my kids are very young (oldest is 6, and I have 4 year old twins). SO, hearing stories like your mom’s give me hope that maybe I can get my kids bigger before this awful disease takes me. Thank you, thank you for giving me this hope tonight. I needed it.
Dear Marian welcome to the best place to be for CC support. Congratulations on not being a lurker any longer and we are happy you joined as your Mom’s story gives hope to others. CC is a monster who runs a roller coaster that we wish NOT to buy a ticket for! You are right about things not being even as good as they are now as my husband was DX 10 years ago and the only thing we knew was that we did not know much! He relocated 6 years ago but for 5 years also took that ride. Wishing your family the very best and don’t be a stranger now and please keep us updated on Mom’s progress. Below is a site you may find helpful:
http://cholangiocarcinoma.org/newly-dx/
Hi everyone,
I’ve been a lurker on this site periodically over the past 5 years, but I decided it was finally time to say hello and become a member.
Background: my mom (now 54) was dx w/ inter hepatic cholangio in 2010 with 7 large tumors in her liver, but no other mets. At the time the cancer was considered inoperable, but after a year of gem + cis the tumors had shrunk enough to leave her enough liver to get a resection. She got a resection in the summer of 2011, with adjuvant gem + cis afterward. A year later, another tumor appeared. This time her surgeon performed radio-frequency ablation. This was fine for a year until (you guessed it) another tumor appeared. Again, she had radio-frequency ablation. AGAIN, one year later (2014), she had to have radio-frequency ablation. We’ve been very lucky that in that time there was no other cancer in her body and the radio-frequency ablation kept it at bay. At that time a scan showed a tiny spot in her lung that the doctors said could be nothing, and should be monitored. It grew so slowly that it wasn’t until a PET scan this summer that we knew definitively that it was mets. At that point, unfortunately, a lymph node near her lung also showed cancer, in a biopsy. So, this August my mom had yet another radiofrequency ablation, and now has gone back on the original gem + cis combo, because that was so effective for her originally.
I recognize we’ve been very lucky to be able to stave off this cancer for this long. I’m so happy to see that people are getting some positive results with gene therapies and immunotherapies, options that didn’t exist when she was first diagnosed. Unfortunately, because the radio-frequency ablation was working, I did not keep up with the latest treatments, and she currently has no tumors which could easily be accessed for genetic testing. We are hoping when one does appear, to have it tested for mutations.
I know this isn’t perhaps the MOST hopeful post, but I do know that 5.5 years ago I would have liked to hear about people who were still alive (if still fighting) years later.
I really appreciate the body of knowledge on this site and everyone who has taken the time to contribute their experiences.
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