Thanks Randi! I'll check that out.
Penn did do a test to find out if I had a KRAS mutation though. I didn't though and that's why I was able to get the panitumumab.
Thanks for the messages Kris, Susie and Lainy.
As far as a tumor of origin test, I'm not familiar with that. The oncologist at my local hospital recommended some sort of RNA test, but I guess it was pretty controversial, not guaranteed that it would work and definitely not covered by insuance. I guess it's sort of moot now though (and hopefully will continue to be).
I’m reluctant to post this, for fear of “jinxing” myself, but I wanted to share. I only posted once about a year ago, but I thought an update would be good anyway. I was diagnosed on 12/13/12 with adenocarcinoma with poorly differentiated cells, which they still to this day aren't sure if it is intrahepatic cholangiocarcinoma or something else - maybe metastatic colon cancer (although all my scan prescriptions describe my condition as bile-duct cancer). I had scads of tests done and they weren't able to find cancer anywhere else but my liver. There aren't any support groups that I can find for “Cancer of Unknown Primary,” so I hope you all don’t mind that I post here despite the haziness of my diagnosis.
Anyway, I had two months of gemcitabine and irrinotecan which shrunk my tumors a bit. They added panitumumab after that (after a long battle with my insurance company to get it approved). Again, the tumors shrunk after two months, so I was sent to the surgeon. I had a liver resection at the end of June where they removed all of my left lobe and a couple of wedges from my right. The surgeon was able to get all the tumors with clear margins and was very pleased. He said that I sailed through surgery. I spent five days in the hospital.The awesome thing was, when they did the pathology on my tumors (and there were a bunch of them), it showed that nearly all the cells in all the tumors where hyalinized – which I guess for their purposes means they were dead. There were only a couple of tiny spots of live cancer cells. My surgeon and oncologist were shocked. Apparently I’m only the third or fourth person to respond so well to this treatment. I went through another two months of chemo with all three drugs and finished up in October.
My PET scan in October was good and my oncologist announced that I was in remission. My tumor markers (CA 19-9 and CEA) were both low and within normal range too. I generally tolerated the chemo well, with the exception of a pretty terrible acne-like rash from the panitumumab on my face, chest and back. That was actually helped by acupuncture though (I think so at least). However, my side effects were worse after I stopped the chemo for a few months before surgery and then started up again afterward (I guess that is normal).
I have been feeling better and life is slowly getting back to normal. My skin has all but healed, with only a little scarring. However, sometimes I get really emotional about my experience. I feel incredibly angry about the time that was lost to treatment and the fact that I have to worry about recurrence (which I know the rate of is high). I’m also very angry about what my husband and family has to go through during my treatment too. I'm terrified of recurrence. Every ache and pain causes me to panic that it has come back and spread. My next scan is toward the end of January and I am absolutely dreading it. I just want to move forward with my life, but I feel like this will haunt me forever. I read that these emotions are normal and I am seeing a doctor about them, but it is still hard. I’m just trying to be cautiously optimistic about the future. This time last year, things didn't look so good and I know how quickly I could be in that situation again. I’m going to try to enjoy the holidays and be like Scarlett O’Hara and worry about it tomorrow. I don’t want worrying about the future to ruin the time I have now.
Thanks for reading,
Thanks for your replies. I really appreciate the concern. I'm a patient at the Hospital of the University of Pennsylvania and they are my second opinion. My doctors are Giantonio (oncologist) and Drebin (surgeon - Chairman of the Department and did all his training at Hopkins).
I did have a biopsy and both (one from the local hospital and one from HUP) pathology reports only described it as "adenocarcinoma." It seems like they basically have come to ICC by process of elimination. My mammogram, colonoscopy, endoscopy and every other test were all normal. My PET/CT scan in late December only "lit up" in the liver. This is why they want to do chemo first, because they aren't 100% sure whether it is CC or liver mets with an unknown primary.
They are doing a phase II trial of the gemcitabine, irinotecan and panitumumab for advanced CC and have had very promising results so far. It may be a moot point if the insurance company doesn't cover it though. I believe that Gem/Cis is the backup plan. Both my surgeon and my oncologist are in agreement that the chemo should go first and were optimistic about the chemo, so I feel pretty good about this plan.
I'm a 31 year old female who was just diagnosed with intrahepatic CC. I have no symptoms. They only found the tumors in my liver (last count was 7) because I went to the ER in November with chest pain (which was unrelated and went away on its own). I've gone through every diagnostic test imaginable looking for another primary tumor. My doctors couldn't find anything, so they have settled on CC.
I'm undergoing IVF now to freeze embryos and am scheduled to start chemo next week. They plan on using gemcitabine, irinotecan and panitumumab. Howeverr, we are waiting for insurance approval because two are off label. All of the tumors are in my left lobe, with the exception of a single "spot" in my right lobe, which the surgeon said he could just ablate. He gave me every indication that they could all be removed. They want to do chemo first because they are afraid that if it isn't CC, then it could spread elsewhere. After chemo then we will begin discussions about surgery.
The last month and a half has been hell for me, my husband and my family, but I'm trying to stay positive. I was reluctant to post on here, but I have read that being a part of some sort of support group is helpful. It's so hard to believe that all of this is happening because I feel generally healthy. The doctors say their goal is to keep me healthy.
I could use some encouraging words and some good vibes because this is all really daunting.