New to the Cholangiocarcinoma world
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Hi Mary,
Yes, they have mention the vague possibility of being able to go on the transplant list. I was so devastated when I did not qualify due to a positive lymph node I am trying not to focus too hard on that possibility. It would be such a miracle but will not stop trying to stop this cancer and become eligible again. My oncologist is the same one as when I was working with the transplant team. I know he has been keeping them up to date on my situation.
I am also trying to do as much research as I can (with my very limited medical understanding) as to what other treatment are coming down the road that I may be a candidate for since a liver transplant may be a long shot. This site has been so helpful. I am also planning on attending the Salt Lake City Conference which my oncologist encouraged.
Thanks so much for your support,
Donna
Hi Dlg,
Thank you for sharing your good news.
One thought that crossed my mind in reading your positive report – is there any possibility that this or hopefully future tumor shrinkage plus the now normal-looking lymph node might make you a candidate for surgery? Did your oncologist suggest sending your new scan to the surgeon you had consulted?
I hope your good response to treatment continues. Please keep us posted.
Regards, Mary
I received the results of Friday’s MRI & CT today. So blessed with the news. Tumor shrank from 2.5 x 2.4cm to 1.5 x 1.4cm and diffusion restriction also markedly decreased. Even the lymph node that biopsied positive for cancer in November looked normal. Everything else looked normal. My oncologist wants to keep me on Gezmar every other week. This is great as I have no side effects from it. Just hope it continues to work on killing the tumor. They are also thinking about radiation on the lymph node. I know cancer is so unpredictable especially this cancer so I am enjoying today’s news and praying I continue to respond well to treatment.
Thank you for these discussion boards. I am learning so much from them about this cancer I never even knew existed 7 months ago.
Hi Dlg,
Welcome to our community and thank you for posting your story. It is good to hear that you are tolerating treatment and that the cancer seems stable. Fingers crossed your next round of scans brings reassuring news.
Scans are anxiety-inducing events for cancer patients. In my own case, the Dr. Google tips about how to avoid scan anxiety absolutely do not work when I try them, so I have no good ideas to offer. I just try to keep myself distracted and thinking about other things.
I hope your future rounds of treatment are uneventful and do their job for you. Please stay in touch. Regards, Mary
Hi. I was diagnosed in July 2019 and have started on the cholangiocarcinoma roller coaster. I am still in shock and denial. Everyone’s postings I have been reading have been a huge help.
I am 62 years old and in good health…or so I thought! I never had any symptoms except for being tired which I though was just getting older and still being very active. Though a yearly check up blood test my liver enzymes were found to be elevated. Doctor order a CT scan which showed my hilar tumor. I was sent to a surgeon who specialist in cholangiocarcinoma. He said the tumor is inoperable due to the location around the main artery to the liver. I was the referred to Siteman Cancer Center and their liver transplant team as a liver transplant was to be my only hope. I did a round of Cisplatin/Gemzar chemo followed by 5 days of radiation. A few weeks off then on oral chemo. Started the testing for the transplant list. Unfortunately, during an endoscopy they found cancer in 1 lymph node near the liver. So I no longer qualify for a liver transplant. I have just finished a round of Gemzar. My white counts and Neutrophil numbers are consistently low and I require Neuprogen shots during every cycle. My oncologist is concerned as to why, so tomorrow I am schedule for a CT scan and MRI to see what is going on. My liver enzymes are back to normal, C19-9 is 52 and steady falling (had been as high as 1721), CEA is normal. In December the Guardant360 test could not detect any cancer (in August it as .2%). I still feel great just so scared of what might be found tomorrow. I will probably have another round or chemo starting Monday if my numbers are ok. They are also talking about radiation of the lymph node if no other cancer shows up in the scans.
Thank you for letting me tell my story. Being able to read about others journey with this horrible disease is very helpful too.
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