My name is Erica and I was diagnosed with Stage IV Bile Duct Cancer on May 10th of this year. I am 27. Would have never known if it hadn't metastasized to my hip and caused me great hip pain, that the doctor's couldn't figure out what was wrong with me. Why would they ever suspect a young healthy woman of having Stage IV cancer. I have tumors on my left hip, sternum, lung, 5-6 vertebrae, liver, bile duct (duh), and lymph nodes. I expect my PET scan looked like a Christmas Tree.
I've been through 10 rounds of radiation to my hip and sternum, targeting tumors that were causing me immediate pain. My skin has been burned but it seems to finally be healing like a sunburn.
I've also been through 4 rounds of Chemo so far. Seems I'm on what everyone else is on, Cisplat and Gemzar. My doctor is great and I am responding well to the therapy. Haven't lost my hair. Megestron helps me keep my appetite going strong. The steroids make me a pacing anxious let's-get-this-over-with wreck during all 6 hrs of chemo. My weeks off from chemo are great but because I had to quit my job, I'm stuck at home, bored, being watched by my super helpful husband and dropped-everything-ran-to-her-daughter mother (handlers).
Found this site reluctantly, searching for more information on just what the heck Bile Duct Cancer is. So far it seems just like me: Rare (I'm a special one-of-a-kind kinda person; Invasive; Complicated.
As far as my mortality is concerned, my doctor can't give me a definitive expiration date because I'm so young. My CA 19.9 started at 51,000 and after 3 treatments was down to 4,000. He seemed very happy about it and said it was great news. If anyone can really explain why this is great news to me, I would be grateful. Seems like a bunch of numbers to me. My tumors are still there. All over my body. I'm more like, "Let me know when my tumors have disappeared and then I'll celebrate." Call me pessimistic. I feel more realistic.
My life had just begun. I'm a teacher and professor and I love what I do. Had a relatively late in life career change and just finished getting my Bachelor's and Master's in 4 years while working. I'm a go-getter. I want my Ph.D. This is ruining all of my plans and I hate it. I need plans. I can't just say, well I'll keep working because I've accomplished most of what I wanted in my life and everything will be great until I die. I'm more the kind of person that would say, "Oh, I have 6 years to live? I can get my Ph.D. in 5, 4 if I kill myself, so yes, let's go for it."
Alright. That's all I've got. ^_^
I wish the best for everyone out there. If anyone knows of any support groups in South Jersey/Philadelphia for Stage IV people, let me know please. Or a Spousal Support Group for my husband at least. He needs it more than I do.
Have a great week!