1

(6 replies, posted in General Discussion)

Hi again,

Thanks for the kind messages. I saw my oncologist at Penn today. He said that while the new tumors were discouraging, the fact that they are still just in my liver is very good. He still wants to be very aggressive and is glad that I'm going for other opinions and will work with and support whatever I decide. He said that I may be a good candidate for HAI, which apparently they are quite good at at MSK. I guess that they are doing some clinical trials with it. However I'm still technically considered unknown primary (I have a different diagnosis listed on every single scan, it's just silly), so I don't know how that will work. He recommended a colleague there. I am also scheduled to see the multidisciplinary liver tumor committee at Johns Hopkins in a couple of weeks. I'm so lucky to live close to so many excellent hospitals.

I do have a hernia along the incision, which stinks. It's small though. I'm going to talk to the surgeon about it next week and get his thoughts about how we should move forward too.

I'm feeling more positive than I was on Monday. I like that all these very smart people will be working together to help me. I'm still feeling great. I'm back at work this afternoon and I think I'm going to go to the gym tonight.

Take care all! I'll keep you posted!
Jess

2

(6 replies, posted in General Discussion)

I received my CT scan results via email this morning.  Unfortunately they found at least one more spot. It is only a 1 cm, but it is adjacent to  the hepatic vein. There may be another spot, but they weren't sure. It's less than 1cm and looks like it could be fatty tissue. The good news is that it does not appear to have spread elsewhere. This is my second recurrence. These little buggers just keep popping up.

I have been treated at U of Penn so far. I have had two resections (last one in February) and have been on Xeloda since.  My first stint with chemo was gemcitabine, irrinotecan and panitumumab (which was downright awful). I really feel great right now and have had very few side effects from the Xeloda. I had a clean scan in June. I know my situation could be much much worse, but I'm very bummed.

I don't see my oncologist until Wednesday so I don't know what he is going to want to do.  They discussed RFA with me for my last recurrence, but they couldn't do it because of the location of the tumor. I don't know if it would work for me here either considering the proximity of the tumor to the hepatic vein. We also talked about radiation, but I didn't really like the radiation oncologist I met. On top of all of this, I suspect that I have an incision hernia from my last resection.

I am at a point where I want a fresh set of eyes on this. I'm going to look for an oncologist at Sloan Kettering, but I'm not sure who to pick. Does anyone have any thoughts on this?

3

(3 replies, posted in Chemotherapy)

Thanks Marion. I'm trying not to read into it too much. I have read that the CA 19-9 is actually a better marker anyway and that CEA can be influenced by liver irritations (which happens while on Xeloda). I haven't heard back from my doc yet about another scan though. He will probably just want me to wait until September. My CA 19-9 and CEA were both normal when I had my recurrence (or they just didn't get it all) in January, so who knows.

I have never had any symptoms or pain from the cancer, just the treatment.

5

(3 replies, posted in Chemotherapy)

Hi all,

I'm on Xeloda since my last resection in February. I had a clean scan in June. However, today I got back some upsetting blood test results. My CEA number, which has bobbing along at different levels below normal made a fairly big jump from 2.3 to 3.8 ng/ml in three weeks (according to my hospital, normal is 3.7 or below). The weird thing is that my CA 19-9 number, which usually fluctuates up and down in lock step with my CEA has stayed almost exactly the same since April. My doc tells me that Xeloda has a bigger impact on CEA than CA 19-9. I'm obviously not happy about this. All my other blood work looks great, with the exception of my RDW, which is 24%.

I emailed my doc to see if I should have another scan. I am scheduled to have another in September anyway.

Any thoughts?

6

(7 replies, posted in Good News / What's Working)

Thanks Randi! I'll check that out.

7

(7 replies, posted in Good News / What's Working)

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.

8

(7 replies, posted in Good News / What's Working)

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).

9

(7 replies, posted in Good News / What's Working)

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,
Jess

10

(6 replies, posted in Introductions!)

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.

11

(6 replies, posted in Introductions!)

Hello,

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.