No, I have not been diagnosed with PSC nor have I ever had any issues with my liver functions prior to this. The cancer has never caused symptoms and was found incidentally. My liver also tolerated my other chemo regimens well. have had three CT scans and several cholangiograms since my stricture was diagnosed with the ERCP. Do you not think it's likely that the pump caused these issues? It seems like the most obvious answer to me. It's a known adverse event and I displayed all of the corresponding symptoms.  Now that I think about it, some of my discharge paperwork has listed my issues as something like "secondary to hepatic arterial chemotherapy."

I imagine I will know the results of the CT scan when I see the hepatologist on Tuesday. That will still seem like forever though! Thank you for your thoughtful responses!

Yes, that was the trial I was participating in. I am no longer receiving chemotherapy though.

I suppose whether or not my current bile duct problems are directly related to the pump is a complicated question. No one will say for sure, but one GI doctor at Penn told me that the sclerosing cholangitis was a well known complication and I got the impression that's part of the reason they fell out of favor (things have gotten better apparently with better dose management and the addition of steroids to control the inflammation). They also did a brushing during my first ERCP for the original stricture stent placement and it came back negative. How the abscess and current problems with my bile ducts are potentially related to thee original stricture and pump isn't all that clear to me. My very layman's understanding (and I'm generally pretty darn savvy) is that the stricture caused the bile to back up and kind of create a breeding ground for the bacteria that eventually (a few weeks later) formed the abscess. How the rest of my biliary tree became damaged is more unclear to me.  I'm having a triphasic CT on Monday that they are hoping it will give them more information.

Sclerosing cholangitis is listed as a "Rare but Serious" side effect of the FUDR that goes into the pump. I honestly don't remember if it was specifically discussed. It probably was. I had no idea that could potentially lead to any of the other things I'm going through.

I also want to say to anyone who may be reading this and considering the hepatic arterial infusion pump  as a treatment option: understand the risks of adverse events very carefully. The biliary stricture was mentioned in the study protocol as a risk and I believe it is very rare these days, but talk to the oncologist and surgeon about what it would mean for you. Throughout my course of treatment I have been called unique, interesting, and even weird because of how my disease and the treatment side effects have presented. Don't discount the pump because of what you have read about my experience here. Just really talk about it with your doctors and understand the the risks before you make a decision. Push them on it. Sometimes I think they get really excited about their studies and have and have a tendency to gloss over that part.

Thank you for the encouraging words Marion. I have had pretty decent spirits through most of this ordeal (of course some days are better than others), but it's getting very hard to keep my chin up with all of this going on. I have been fortunate enough that I haven't looked "sick" through most of this, with the exception of the Vectibix rash. I have lost a decent amount of weight in the last three months (I wasn't heavy to begin with) and with my skin and eyes being so yellow, it definitely looks like something is wrong. I know that I shouldn't let my vanity get the best of me, but it's hard to do. My appearance is important to me and looking good makes me feel good. It's hard to go to work or out in public and have people looking at me like that. I do realize that so many people have it so much worse, but I think I'm just giving myself a pity party. I'm sure it will pass. The Vectibix rash was really hard, but at least I knew what was causing it and that it would end when I stopped the treatment. I have no idea if/when this will end. I'm trying to minimize it with lavender makeup primer (who knew that lavender would offset yellow?) and wearing my glasses so my eyes aren't as obvious. It only helps a little.

I also have thoughts of transplant on my mind, but I don't know if anyone would do it for me. My 57 year old mother shares my blood type, is in excellent health and is a very willing donor (I think in her mind it makes her happy because It's finally something she can do to help - I can't imagine the anguish a parent feels in being powerless to help their child). The cut off for a lot of living donor transplant programs seems to be age 55 and my doctors at Penn are still calling it "Adenocarcinoma of Unknown Primary" even though MSKCC calls it ICC. Although either diagnosis may exclude me. The hepatologist I'm seeing on Tuesday is part of the transplant committee, so I would imagine it will come up in conversation.

Thanks for letting me vent. It's helpful to get it all out. I'm sure my self pity party will end soon enough. As my mom always says "You can go there, but you can't stay."

What a mess....

The day after I posted this topic, I got a call that my TBILI was 10.3, so they wanted to put the drain in right away because of the holiday weekend and because my IR was about to go on vacation. I went in, they put in the drain in and I stayed until the 4th. My TBILI went up to 11, but they said that may be expected. On the 6th my TBILI was 11.3. Another IR upsized the tube from 16f to 18f and cleaned out debris in my ducts. I was draining crazy amounts of varying colors (brown/orange/green) for several days. On 7/13 my TBILI was 12. On 7/14 my IR told me to cap the drain and then on 7/15 my TBILI was 13.7. The IR told me to put the bag back on, which I will do tonight.

I'm so frustrated because this doesn't seem to be getting any better. I'm taking Augmentin, which I guess has some propensity to cause liver damage (but I was informed that most antibiotics do). My Infectious Disease doc won't change me to anything else until my CT scan on Monday confirms that my abscess is gone (the abscess had an anerobic bug, which is treated with the clavulanate potassium part of the Augmentin). If it is, she'll switch me to just amoxicillin.

My oncologist at MSKCC is also interested in seeing my CT scan results.

I'm seeing a hepatologist on Tuesday. I don't know what to expect and I don't know what else they can do. I'm hoping that the Augmentin is the issue and things will get better if I'm off of it, but I doubt I'm that lucky. I'm yellow but aside from being tired, I feel pretty well. I'm only itchy occasionally and the Questran helps that.

To make me even more freaked out... my CEA keeps going up by 0.1 every time it's drawn. It's 1.4 now, which I know is very low. This is from when it was <1.0 in the beginning of May (I finished chemo in mid-March). I just don't like the trend. I was at 4.1 when they found my (single 1cm tumor) recurrence last September and was 2.1 when they stopped seeing the tumor on my scans in February. They couldn't see anything in my last scan on 6/8.

I just wanted to tell my story. I'm so frustrated. I feel like I have been through the wringer. It's been tough for the past two and a half years, but the past 3 months have been absolute hell. The crazy thing is that none of this is from the cancer, it's all from the treatment. If the cancer comes back after this (which I know it's likely to do), I will be beyond despondent.

(I've edited this for spelling)

This all happened today, so I haven't had time to do any research. I'm hoping that you extremely knowledgeable folks can point me in the right direction. I had an HAI pump implanted last November. The good news is that they haven't seen any tumors on my scans since the end of February. The bad news is that I have had some pretty terrible adverse effects. It started with mild pancreatitis, then a biliary stricture that required stenting. Then in May, I found out that I had a 9.5cm abscess in my liver which had me in the hospital for 8 days (in the MICU for septic shock one of them). I had a drain put in, which I still have. I have had to have the tube changed about 8 times because the abscess was full of necrotic tissue. I went to see my IR today and the good news is that the abscess is gone. The bad news is that my bile ducts are now apparently junk. They are weeping everywhere and not draining properly. My IR is checking with GI to see if they can do anything else with stenting (I had mine replaced last week because it was occluded and I got all jaundiced. I'm still a lovely shade of light oompa loompa). He's not optimistic though and thinks I'm going to need an internal/external drain for the rest of my life. Hopefully it will be something I can cap and not have to wear a bag (which I obviously hate). Should I be seeking another opinion? I'm at a large university hospital with an excellent reputation. I'm usually pretty on top of what my treatment options are, but I'm at a loss here. Any help would be greatly appreciated!

7

(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

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(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?

9

(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.

11

(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?

12

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

Thanks Randi! I'll check that out.

13

(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.

14

(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).

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(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

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(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.

17

(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.