Recurrence – Foundation One – Abdominal Fullness

Sorry for the multiple topics, thought it might be easier than posting separate ones.

A brief history –
I had a resection of my tumor in February 2014 in addition to that –
right side of the liver removal
gall bladder removal
bile duct removal – re-routed to intestines
small section resection of small intestine
Gemzar/Oxaliplatin for two months
After that – Radiation Monday through Friday for six weeks, 5FU for first and last week of Radiation
Gemzar/Oxaliplatin for 1 month after Radiation

more detailed history here – http://www.cholangiocarcinoma.org/punbb/viewtopic.php?id=12625

Since then –

Final chemo in September 2014. During my radiation treatment I developed an incisional hernia from the surgery in February 2014 (do not feel that radiation caused, just happened concurrently). Doctor said it looked like my bowels were pushing through my abdomen in the same place my incision was for tumor removal. Doctor would not operate until all of my treatments were complete and I had rested for at a minimum of 3 months. PET scans in October 2014 and January 2015 came back clear.

Surgery was performed on January 30th of this year and biological mesh was placed in the area where the hernia was. During the surgery, surgeon discovered three nodules, two of the nodules were intraperitoneal and one of them was adherent to the peritoneum. One of the nodules was biopsied and was found to be positive. Although not entirely surprised, it seemed a bit odd that all of my scans have been clean. My oncologist thinks this is a recurrence of the same cancer and not new.

My oncologist sent my specimen to Foundation One for genomic testing and I am waiting on my results (will probably be another week or so). My doctor has not provided any treatment options at this point and wants to wait until this test is returned before discussing further treatment.

I noticed and have posted on Matt Reidy’s thread the similarities of our journey’s but wanted to get input from others on the following:

Has anyone else had any specimens submitted to Foundation One and have they suggested alternative treatments and have you started any and with what results?

I have always had this abdominal fullness after eating and it never mattered how much I eat. It will last for hours and usually until the next time I eat. It doesn’t look like I’m bloated but feels similar. Sometimes the best relief is to lie flat on my back. It feels like when the organs drop and there is no pressure there is quite a bit of relief from the fullness. My doctor told me to eat smaller meals throughout the day, but the size of the meal never mattered. I’ve tried eliminating the usual bad stuff from my diet but it doesn’t seem to make any difference. I always thought it was in part because of the hernia, but now that that’s fixed, I still have the feeling. Is this the new “normal”? I certainly hope not. My doctor said that because of the surgery and re-routing it will take time for my body to re-sync and function the way it used to. Seems like a long time…. Have any of you experienced this or are you currently?

Thanks for any input/suggestions you have

~Kris