Hi Lainy,

I'm so glad you think that this would help. I was thinking of starting a blog, but never really got to it. I thought I'd test the waters here. A lot of these tips can be used by folks with many different types of cancers. We'll see.

I actually live in the Philly area and go to the University of Pennsylvania for treatment and did a short stint at MSKCC as well. Unfortunately I don't qualify for a transplant at this time (I've contacted several hospitals) because I had ICC. It will be two years NED if all goes well at my next scan in March (I'm already getting nervous) and they said the may consider me for a transplant in a few more years if the cancer stays away. My jaundice is from cholangitis I developed as a result of the hepatic arterial infusion pump that I was treated with at MSKCC, not because of any tumors.

Hello everyone,

This may seem like a trivial topic compared to a lot of them here, but over the last four years with this disease, I have learned a lot about how to minimize my side effects and how to hide the effects of my disease and treatment. Vanity may be seen as a character flaw, but on the days that I look my best, I feel better too. I’d like to pass along some of the things I have learned, mostly by trial and error. If this post is well received, I’ll try to write others.

I'm going to start with something that I am currently dealing with daily, I want to share my experience with how to minimize the look of jaundice. My T-bili averages around 15, but is stable. I’ve gotten as high as 22. I’m naturally very fair with red undertones in my complexion. On my good days, I look like I have kind of a yellowish tan and people don’t notice. On my worst days, I looked like I glowed like a tennis ball or highlighter marker. Obviously, it’s going to be harder to cover the yellow look on bad days, but what I am going to tell you will help minimize it no matter what. A lot of what I am going to say will be for those who are inclined to wear makeup, but there are some other things that will help anyone. Certain things will be friends and enemies to everyone.

Stay hydrated
I mean really hydrated. I’m sure you have a regimen with your doctor of medication etc, but you also need to drink lots of water. When I am dehydrated, I notice that I look more yellow. Keep a bottle of water with you all the time and by your bed. If you wake up in the morning and you look more yellow, start drinking. It will help flush some of that bilirubin out of your blood.

Light
Certain lights will make you look more yellow and/or glowy. For me, direct sunlight and fluorescent lights are the worst. Some days it will even be bad during cloud cover. It varies. There are a few things you can do to minimize this, the first being hats with brims over your face. They will cover your forehead, which will minimize the amount of your yellowish skin exposed and keep light from directly hitting your face. Lots of stores, including department stores, Charming Charlie’s, Francesca’s, etc. have great hates and they are in style!  For women, try fedoras, floppy hats, newsboys, buckets, etc. Most men’s hats other than beanies have some sort of brim. The second are glasses. Obviously sunglasses will cover your eyes, but even clear lenses will reflect some of the light and minimize the yellow in your sclera. I used to wear contacts, but now I almost exclusively wear my glasses (sometimes I’ll wear contacts if I’m going out at night). Get yourself a pair or two that you really like. Check out Warby Parker for some fairly inexpensive retro looking glasses. I’m a big fan and they are in style. Don’t feel bad about getting glasses with non-prescription lenses. Do what you need to do. Another tip is that if you are out to eat somewhere with lots of windows and it is sunny, try to sit with your back to the windows. That way the light won’t be shining right into your eyes.

Makeup
The first thing I want you to remember that shine is your enemy. Get rid of anything in your current regimen that promises to increase glow, luminosity, or whatever marketing word they are using. The bilirubin in your skin will make you plenty glowly. You need matte everything! Find a moisturizer for combination or oily skin because it will add moisture without adding a bunch of shine. I like Neutrogena Oil-free Combination Skin moisturizer. Next, find a matte primer. I have been using Rimmel Fix and Perfect Primer. Primers are important because they smooth out imperfections and help keep your makeup on. Foundation is tricky. I am still in the process of finding the perfect foundation and it will probably take some trial and error on your part. I have tried Kat Von D’s Lock it, L’Oreal Paris Infallible Pro-Matte, Dermablend, and CoverFX. They all have good coverage but are very thick. I just bought some Rimmel Stay Matte Liquid Foundation. So far so good. It spreads nicely and stays on for a good amount of time. I keep a compact of CoverFX pressed matte foundation in my purse for touch ups. For powder, I love CoverFX Matte Setting Powder. Get a big fluffy brush for that. For color selection, you may be tempted to choose a color that is the same as your natural skin color. This is a mistake. You are going to need to go a bit more yellow or your will look unnaturally pale. When applying all of these products, make sure you cover your ears, neck, and whatever part of your chest is exposed. If you are wearing your hair up, make sure to put makeup there too. Full coverage foundations may make you break out more than normal. Make sure you wash it off before bed. I’m not 100% sure how to approach this if you have very dark skin, but I overheard a doctor telling residents that it’s difficult to see jaundice in these folks, so it may not be a big problem for you. Make sure you use a blush so you look more natural and healthy.

Purple!!
Purple is definitely your friend. It is the opposite color from yellow on the color wheel, so it will help offset it. I wear purple shirts and I use purple eye shadow. One thing you may want to consider is using a lavender complexion color corrector under your foundation. There was nothing on the market when I first started trying this, so I had to buy what was basically purple clown makeup. It was not ideal. Now for some reason there are a bunch of options available, which is great for us! You can try a lavender primer like ELF or NYX. I don’t think these do a lot though and they add shine. I really like the Sephora brand color corrector, but sometimes it makes my skin feel a little greasy. Color FX has one, but it’s more like a lipstick consistency and I find it difficult to spread over my whole face. There are others out there. Try a few products and see what happens. Don’t go overboard with the purple makeup because it can make you look greyish, which is not a healthy look. Lastly, if you have dark hair, try asking your stylist to add more of purple undertones to your color. I’m not saying you go full crayola here, but you can add some purple undertones and it may help. I dye my hair a dark red with very intense purple undertones because I think it’s fun. You don’t need to go that extreme though.

Well, I hope this helps you feel a bit better. Let me know if you have any questions. I have more appearance based advice and some more medical related advice too. Let me know if these are things you’d like me share.

Be well!
Jess

Thank you so much Lainy! Happy holidays!

I'm so glad I could give you some hope. I'm cautiously optimistic. I mean no offense to anyone who frequents message boards, but I tend to avoid them. Unfortunately I think people who aren't having great results tend to post more and for me, that's demoralizing. I know they help a lot of people though and there's no right way to cope. Find what works best for you.

I posted this in another thread which gives kind of an overview of what my course has been, but it isn't entirely applicable to this discussion. I won't sugar coat it for you. It has been hell and I feel more sick now than I ever did from the cancer. I was asymptomatic when I was diagnosed and it was just found incidentally. My intrahepatic tumors were confined to my liver. I'm still here though and I try to be grateful for every day I'm on this side of the grass (my sense of humor is dark. It's a coping mechanism). I don't mention it below, but my first course of chemo was gemcitabine, irrinotecan, and panitumumab (which only helps people who have a KRAS wild type tumor).

"I haven't had HIPEC, but I have had two resections and an HAI pump insertion. My first resection was at age 32 and they took my whole left lobe and the second was at age 33 after a recurrence and took wedges out of my right lobe and did RFA. After both surgeries, I was back at work after three weeks. I pushed WAY too hard though and I don't recommend that course of action. Since you're young like me and if you're otherwise generally healthy, then hopefully the recovery won't be terrible. My pain was well managed. My worst surgery was the third when I had an HAI pump inserted. The recovery does seem to be getting harder for me, but I know I am chock full of adhesions and scar tissue at this point, so they have to get through that mess before even doing the surgeries. None of my surgeries were laproscopic. I have a big chevron scar, which some younger doctors surgeons I have seen is from an older technique. I trust my surgeon though.

I had six months of neoadjuvant chemo and three months of adjuvant with the first surgery. Then I had my first recurrence and we went right to surgery. I was taking Xeloda when I had my second and we went right to the pump insertion. I had three months of HAI chemo as a part of a clinical trial at MSKCC, which was stopped because it did massive damage to my bile ducts. Luckily the tumor was gone by that point and (knock on wood) I haven't had to have treatment for the cancer since February 2015. I'll be dealing with the collateral damage from the HAI chemo (which is significant and a very long story) for the rest of my life."

Let me know if I can answer anymore questions.

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(3 replies, posted in General Discussion)

Do you have access to a nurse practitioner or physicians assistant? I have found that "mid-level" health care providers were much more helpful with managing side effects and quality of life issues.

I haven't had HIPEC, but I have had two resections and an HAI pump insertion. My first resection was at age 32 and they took my whole left lobe and the second was at age 33 after a recurrence and took wedges out of my right lobe and did RFA. After both surgeries, I was back at work after three weeks. I pushed WAY too hard though and I don't recommend that course of action. Since you're young like me and if you're otherwise generally healthy, then hopefully the recovery won't be terrible. My pain was well managed. My worst surgery was the third when I had an HAI pump inserted. The recovery does seem to be getting harder for me, but I know I am chock full of adhesions and scar tissue at this point, so they have to get through that mess before even doing the surgeries. None of my surgeries were laproscopic. I have a big chevron scar, which some younger doctors surgeons I have seen is from an older technique. I trust my surgeon though.

I had six months of neoadjuvant chemo and three months of adjuvant with the first surgery. Then I had my first recurrence and we went right to surgery. I was taking Xeloda when I had my second and we went right to the pump insertion. I had three months of HAI chemo as a part of a clinical trial at MSKCC, which was stopped because it did massive damage to my bile ducts. Luckily the tumor was gone by that point and (knock on wood) I haven't had to have treatment for the cancer since February 2015. I'll be dealing with the collateral damage from the HAI chemo (which is significant and a very long story) for the rest of my life.

So I guess my point is that there's no "right" way. Everyone is different. If you're confident with your doctor and have sought out at least one more opinion (preferably two), then trust their judgement. I completely understand the instinct to have that thing out of your body as soon as possible though. It's very strong.

Be well

Hi Shellie,

I'm not a regular poster, but I have been traveling this road as a patient for the last four years (tumor free for a year and a half as of my last scan in September....Fingers crossed it stays that way). You're not going to like my response and it was really hard for me and my family to accept, but there really is no way to KNOW if you're doing the right thing. Some of the decisions we have made were good ones and some didn't turn out as planned. All you can do is gather all the information you can through additional opinions, clinical research papers, and by questioning everything. Then you have to trust your instincts. Try to take some comfort in knowing that you are doing the very best you can with the information you have. Unfortunately there is no magic bullet (anyone who tells you different is lying or selling something), but good things can happen.

Happy holidays and my best to you both,
Jess

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!

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(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?

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(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.

18

(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?

19

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

Thanks Randi! I'll check that out.

20

(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.

21

(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.

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(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.