Topic: New Diagnosis
Hi my name is Susan, my husband (Le, 41 yrs old) was diagnosed with stage IV intrahepatic cholangiocarcinoma in January 2013. I've read how rare this cancer is and how horrible the prognosis is for those that are not candidates for surgery. I am still grappling with the reality of my husband's diagnosis. We have two beautiful daughters (13 &9) and we are doing what we can to extend the time he has with us. We are very glad to find a community that can help us kick CC's butt!!
A brief timeline of events:
Jan 2: Went to primary care doctor because of severe itching
Jan 10: Became jaundiced dr ordered labs, ultrasound, & CT scan. Bilirubin was at 18
Jan 16: We were told it was cc but still needed a biopsy to confirm and ERCP to place stent to relieve symptoms
Jan 21: Went in for outpatient ERCP for stent placement to relieve symptoms of the blocked duct - Procedure failed and was hospitalized for a week due to severe pancreatitis
Jan 24: Had biliary drain place due to the failed stent placement and a biopsy was done to confirm cc - I wish I had known that performing the biopsy would exclude Le from a liver transplant. I hated that one treatment option was crossed out and I couldn't do anything about it. Bilirubin levels at 22.4
Jan 25-Mar 1: Discussed options with primary care doctor and she said that we really don't have any oncologist specializing in cc referred us to MD Anderson. Insurance didn't think we needed to be at MDA so they didn't approve enough coverage for MDA to accept my husbands case. So we had to find an oncologist in town to agree and call insurance to advocate on my husbands behalf. After our oncologist spoke with our insurance company, they amended the coverage and MDA accepted my husbands case in days.
Mar 21: We met Dr. Thomas Aloia for an initial consult. He said that he's 70% confident that Le is a surgical candidate. CT scans didn't show any metastasis and labs are stable. CA 19-9 and CEA markers are normal.
Apr 2: Day of surgery. After 3 hours Dr. Aloia aborted the surgery because he found that the cancer had metastasized to the peritoneum. He did remove the gall bladder to prevent possible spread of cancer due to proximity it to the bile duct. Biopsy on lymph nodes were all positive for cancer. Hospitalized for a week for recovery.
Apr 8: Met with Dr. Javle to discuss our options. He prescribed gemzar/cisplatin to be administered by oncologist in our hometown. We will be back to restage in July and discuss targeted therapy. Dr. Javle said prognosis is 6 month without chemo, one year with chemo. It felt like a ton of bricks just came crashing down when he shared the typical prognosis for stage IV cc.
Le started chemo May 1st. He had his fourth round this past Thurs. For the most part, chemo fatigue and the body aches are the symptoms he's experiencing. It seems that Le has more problems with the biliary drain then anything else (excluding the actual cancer). He's has had the drain replaced 4 times since January. He still has constant pain at that site, which he controls with tramadol and he takes oxycodone for the breakthrough pain.
Le's bilirubin is down to 1.3 which is phenomenal compared to were it was at back in January. But his CA 19-9 and CEA was negative and is still negative. Our oncologist said he really can't tell if the chemo is working because Le has no tumor markers even though the cancer has already metastasized. Has anyone else heard of such a thing? We will be back at MDA in July to restage to see if chemo worked for Le and also discuss targeted therapy. Only the primary tumor in the bile duct shows up on images, so I don't really know how doctors will be able to track the progress of treatment and such.