Topic: Ready to join the discussion
I have been popping in periodically and reading the discussions but haven't jumped in till now. My mom is on this board somewhere also (Ceci).
I'm a 42 y/o mother of an amazing 20 month daughter and great husband of 3 years in Baton Rouge.
I was diagnosed in late October after going to the dr for some general pain around my right side, thinking it was a gall stone. The ultrasound and biopsy revealed 12 tumors on my liver (11 on one side, and 1 on the other side) and due to the elevated CA 919 levels - I was given a CC diagnosis by my local oncologist and told essentially it was inoperable due to the number and place of the tumors. I think the largest is 2.5 or 3 mm. They didn't find it had spread anywhere else outside the liver. The only treatment option given was chemo - to prolong quality of life. The dr. told me to plan my life in months, not years.
We immediately traveled to MD Anderson and met with Dr. Shroff who confirmed the diagnosis and treatment options. She did say a liver transplant was a remote remote possibility after 6-10 months of good response to chemo but not to get my hopes up, essentially.
I started on chemo - cys/gem in early November and have completed 3 rounds with pretty manageable side effects.
I did send my files to John Hopkins and MSK for consults. John Hopkins concurred with the chemo being the first line of treatment. Dr. Fong from MSK called me to say he believes a portal vein embolization would be a possibility if the chemo stops or shrinks the tumors. He wants to see the scans after 4 chemo treatments (which will be around new years eve)...I have been having significantly less pain - almost down to no pain, it usually shows up if I'm tired or have pushed myself too much during the day.
That's pretty much my story so far - still digesting this news. I had mainly been focusing on taking of myself, my daughter and husband, staying positive - and letting mom navigate this site for more details, options, etc. I know she has found great info on the port, chemo, etc from you all - so thank you!
In general, this site has given me lots of hope in some circumstances that there are other treatment options that would give me more time with my family. I am still figuring out how to read the sad news and downturns of folks on this board without letting it get me too down. But I know I need to jump in and own the reality - good and bad - so this introduction is a first step. Here is my caringbridge page - http://www.caringbridge.org/visit/alisonneustrom