January 28, 2012 at 1:33 pm #56995tiff1496Member
@marions- Feb. 15th, it will be my first scan since learning of the cancer.January 28, 2012 at 5:58 am #56994marionsModerator
Tiff…unless you are enrolled in a clinical trial (like our Lauren) you will be on treatment until the tumors have shrunk or, until you have reached maximum benefit as in Jtoro’s case. When is your next scan?
All my best wishes,
MarionJanuary 28, 2012 at 5:57 am #56993wallsm1Spectator
I don’t think there is a”set” # of chemo treatments you get unless you are doing it for post resection prevention or as part of a clinical trial. I think it’s a lot of let’s do X number of rounds, see how you respond and go from there. For many people with this disease they will be on chemo forever. The good news is, so many people on this site seem to tolerate chemo so well. It’s amazing how tough people are on this site and I think it’s inspirational.
I was ordered a total of 12 doses post resection and then a scan will be done and then we go from there. I have had 10 so far of the infamous Gem/Cis. People are getting excited for me because I’m almost “done”. Thanks to my last ct I may not be done, so it’s hard to share others excitement.
I agree with Pam. People just assume it’s breast cancer if you’re a young female. It seems pretty much no one knows about this cancer, which is a shame.
Best wishes and take care!
SusieJanuary 28, 2012 at 5:06 am #56992jtoroMember
I have been on chemo for 20 months and have only missed 1 because of low counts. There is no end to my chemo treatments. I hate when people ask, I just say there is no end I have to do this forever. I have been stable for 20 months, but the Gemzar /xeloda just stopped working and I had a little growth.
He has put me on oxiliplatin with 5fu and had my second treatment yesterday. Hoping and praying this treatment works as well as the last. I can’t have surgery as it has spread to liver, lymph nodes, lungs, and peritoneal area. It was in all of these place at my original diagnosis.
JtoroJanuary 28, 2012 at 4:04 am #56991pamelaSpectator
I think when most people see a younger girl that is losing her hair and looks like she is on chemo, they automatically think breast cancer. I know I always did before Lauren got cancer. A lot of people don’t know that there are many kinds of cancer. I sure never heard of cholangiocarcinoma before Lauren was diagnosed.
Lauren has had 9 chemo treatments. Twice she has had to skip a treatment for low platelets. On this clinical trial she will have 12 and then we don’t know.
Take care Tiff.
Love, -PamJanuary 28, 2012 at 1:10 am #6270tiff1496Member
I wonder…how many chemo treatments have you or your loved one had? I will get #6 Monday.
People often ask how many treatments I’m going to need, and it sucks not having an answer. Like I know someone with breast cancer. She needs 6 treatments, then gets surgery. I wish it was that easy for us (not saying breast cancer is easy).
Speaking of that…why do so many people think I have breast cancer?
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