Just diagnosised
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Dear Kasia,
Thanks for sharing your story with your new friends. October 15 is not that long ago. I was diagnosed on Aug 30 of this year and it is hard to remember life before that. As dark as the stats are,many of us keep finding light and hope in many different places… I struggled so much with all the info I found on the web. Finally I realized this was my story and so this is your story too. IT is good to have this space ( this discussion board to hear, listen , learn and just be.blessings,
Rev. WayneHi Kasia,
Welcome to our group. Mary gave you some starting points and the only thing I would think of adding is that it is very important to see a doctor at a cancer center which has an interdisciplinary team and ideally experience with cholangiocarcinoma. My mother was not operable, but she had chemo and radiation treatments with Y-90. It did the trick on putting her into remission and we went treatment-free for 3 years. She’s finishing up chemo now and we’ll be looking at next steps with goal of pushing it back for another 3 years ( or more :). Also on our list is getting a tissue sample to send out for genetic testing. In just past few years, we are seeing many more clinicals or treatment options based on individual mutations.
Where are you being treated?
Best wishes,
Catherine
Hi Kasia,
Fingers crossed that the planned chemo will do the trick and get you to surgery. I don’t think there are good data on success rates given the small numbers of patients with our rare cancer, but there have been quite a few folks on this board who were able to have surgery after some chemo cycles. The chemo will also lower the risk of the cancer spreading, which also helps get patients to surgery. If you want to look through internet info, try searching “cholangiocarcinoma,” “neoadjuvant,” and “downsizing” or “downstaging.”
When the CCA is only found in the liver, there are also localized treatment options patients look at with their doctors. Some of these have good track records in shrinking or eliminating tumors. I have copied a citation that reviews these treatments below. If you search the treatment names using the discussion board search engine (e.g., “TACE”), you should find some patient stories about their experiences. Some are in the radiology realm, so you may wish at some point to consider a consult in that specialty if your treatment center is not already using a team approach to determining treatment.
http://hbsn.amegroups.com/article/view/13987/14591
The most common chemo mix used for cholangiocarcinoma is gemcitabine with cisplatin. Some oncologists may elect other but similar chemo regimens (e.g., gemcitabine plus oxaliplatin), for example, if they believe the patient will better tolerate the potential side effects, since side effects can vary from one chemo drug to another.
Be sure to ask lots of questions as you proceed with treatment. It sounds like you are in good hands and you are doing lots of research into treatment options.
Regards, Mary
Hi, I was diagnosed October 15th and will be getting a portal for chemo and meeting with my Oncologist on Tuesday. At first we thought I had a lone primary tumor and was headed for surgery. However, last week a second CAT showed a second tumor, both are in the liver. Now the plan has changed to chemo with hopes of shrinking the tumor and possible surgery later. I need advise on types of treatment and types or combinations tried for chemo and success information. Thanks Kasia
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