New to Board, to CC, that’s what they think I have now…

[jeffg]

Hi Patti-I agree 110% with the Commander. My CC is of unkown primary and always will be. I had Oncologist actually verbally slamming each other over where it originated. It really hasn’t matter to me. I still went the routine of half of liver removed and gallbladder. Then monitor with Ct scans.
If I had to do it again I would have a round of chemo after and that would be it. You need a surgical opinion on if the liver tumor is resectable with clean margins and get rid of that troublesome gallbladder at the same time. That’s just my opinion. Have you been told if the tumors are on one lobe or both? Patti, it’s so awfully confusing at times I know. The bottom line is if it is DX as intra CC it is considered systemic (in your blood) eventually chemo may be the choice to keep it under control but long term chemo will eventually wear out your bone marrow and weaken your on immune system so you have to draw the line at some point with chemo as well. You may have to start and stop chemo giving your body time to recoupe. Patti, March 16th will be nine years fighting this miserable disease. Yesterday I saw my oncologist and my blood counts, BP, and about everything else was within normal range. The oncology Nurse commented in amazment this was the best I’ve seen your vitals in 3 years. I just told her it was amazing how the power of the human mind and balance of energy can do for ya. Listen to the Commander Patti, and get a second or third opinion, oncology and surgically. Positive state of mind and self advocation as scary as it may be, is the way to go. 1. resection if possible (more than one opinion)2. Chemo if you want and then only if it is working. If not working try another type of chemo 3. Radiation There are different types (some real high tech procedures available). You also mention you were having some pain in your side– Don’t hesitate to ask for MRI of pelvis,abdomen, and chest. Listen to your body. I hope this was not to blunt patti, but the point is take the bull by the horns and you can manage this disease for a long time in my opinion. Again this is just my opinion, we all have them. After saying that, it also depends on when it is found, where it is found, how advanced and wheter it is low grade or high grade which determines how rapidly it progresses. the pathologists can determine that by how active the biopsy sample is. We all have different DNA and unfortunately different outcomes. At least remember the Lord helps those who help themsevles I believe anyway. Don’t forget to maybe consider meditation/visualization/and other techniques that you can be doing while all else is going on. CC is still uncharted waters and changing course as your body and minds feels may be needed. Sorry for rambling, Just want you to know this disease can be manageable to a larger degree than some might think. I wish ,hope, and pray that you get the answers your looking for and have positive outcomes. I don’t want to sugar coat nothing, you will experience and I think you already have with chemo a bumpy road. Some more than others.
God Bless,
Jeff G.

[thecdr]

PattiB, just remember that you are the patient and therefore the customer. If your doctor gets defensive I would take this as a warning sign, you have every right to seek a second opinion and should. any doctor worth his salt should not only not mind your wanting a second opinion, but should encourage it. If he/she is offended by that I would not have a lot of faith in that doctor, but that is JMHO. You can start here by looking under the Major Cancer Centers, they all have contact information and will tell you what kind of information you need.
Don’t be scared of your oncologist, remember, it is his RESPONSIBILITY to take care of you, it is NOT your responsibility to take care of him. You have been given a very serious diagnosis, it IS your responsibility to make sure that you are being given the correct information. Good luck

Barb aka “the commander”

[pattib]

Hi again,
Thanks so much for your thoughtful responses! I feel better knowing that I’m not the only one in this situation! I had the CT scan yesterday and now have to wait until next Thursday for the results.

How do you go about getting a second opinion? Do you have to find someplace/someone you think might be good? Do you just tell your Dr that you want one and who do they recommend? It seems kind of silly but I have no idea what the protocol is, and to be honest, I feel a little scared to tell my Oncologist this.

In January, after the first 6 weeks of waiting, I asked my sister to come down from Minnesota to go with me (I’m on my own down here in Arizona). We worked for hours on specific questions and still the interview didn’t go well and it seemed my Dr. got a bit defensive. I just don’t know how to go about this thing I guess. Any suggestions would be greatly appreciated!

[pderat]

Hi Patti- not sure if you have read any of my posts, but Dave’s CC is almost exactly the same as yours except he has multiple large tumors in the left lobe but nobody has ever really seen any bile duct tumor and he has never had any typical symptoms.

Hypercalcemia almost killed him which was what brought him to the hospital. That usually goes with lung cancer so they did a CT scan of his lungs and saw the liver tumor.

Initially they called it CUP but then after a second bx at Mayo they decided it “may be CC”. His blood work does not indicate anything. We went to Mayo but they said too many tumors for transplant and that “it” would probably go to the new liver. He then had 5 rounds of Gemzar and Oxcilliplatin with no change except pulmonary edema that again almost killed him. In fact he stopped breathing and I resuscitated him.

They stopped the chemo and said go home and wait and see. He felt quite good for awhile but then the hypercalcemia came back and he spent most of the time in bed from fatigue. Still no typical symptoms but the tumors were enlarging.

In January we went to Cancer Treatment Centers of America and it was the best decision we have made. Unfortunately you can only go there if you have a PPO insurance, and can come up with the co-pays, but the treatment there has been beyond incredible. They have provided a lot of hope and different options for treatment and actually care about you which is a big change from the Boston Hospitals. I can’t recommend them enough. Dave may not survive this but we feel we are getting the best and most progressive treatment available.

CTCA has 5 hospitals in US now with a new one opening soon in Phoenix. Hope this is of help to you and that you will stay connected with us here on this site as it has been a life-saver for us having access to other people fighting this horrible battle.

Our Doc at CTCA is checking out the new drug we found out about on this site….triphendiol. It looks very promising for reducing liver tumors. Sorry to be so long-winded but it can be difficult to try to go back and re-harsh people info, so thought i would make it easier by giving you a synopsis. Best to you.

Patrice

[ron-smith]

Hi Patti

I found your post very interesting since I am experiencing very similar thoughts just now. I was diagnosed with ICC in July 2006 when I had an ultrasound scan for suspected gall stones. I had a partial resection of the right lobe and removal of the gallbladder in August 2006 but the tumours returned and I had the full right lobe removed in March 2007. Again the tumours returned and I have been told there are no further surgical options available. I have never had any symptoms and basically live my life as normal. The only chemotherapy I have had was as part of a clinical trial but this only lasted about 3 days because the drug (Xeloda) brought on an angina attack, which eventually required angioplasty and stenting. I am now attending the oncology centre in Glasgow and their advice is not to start chemo since I am feeling well and to wait until I have symptoms.

At this stage nothing apart from palliative chemo is being suggested as anything else, including pre-emptive chemo, is likely to cause more damage than it can heal. Interestingly, they are also not very keen on giving me CT scans. This I have found strange but their reasoning is that there is no benefit to me knowing that the tumours have increased in size or number if I still have no symptoms. I can understand that to a point because you do get depressed if the scan shows bad news and that cannot do you any good. So I feel as if I am presently feeling fine, know bad things are happening inside me, but doing nothing about it until I am unwell, by which time it may be too late. I feel I should be doing something positive now but at the same time am scared to tamper with things. I have persuaded them to give me a 6-month CT scan and will keep my fingers crossed that it does not give a depressing result. Should I have bothered with the scan? It is difficult to know what to do for the best.

All the best

Ron

[scragots]

PattiB,

I also had intrahepatic cholangiocarcinoma. It was found incidentally when I was (probably) having a gallbladder attack. I had a 5.5 cm tumor in the right lobe of my liver. I have a fantastic doctor, a liver specialist/oncologist/surgeon who was able to take it out right away. I am now 13 months after resection and am doing well. I go for CT scans every 3 months, with my next one March 11. Then I will start going every 6 months.

I don’t believe I ever had pain or jaundice DIRECTLY RELATED TO THE CHOLANGIO. I was having pain, which sent me to the hospital, but I had a big stone in my gallbladder, which did cause jaundice days later, for a couple days. But if not for the GB attack, my cholangio would not have been found until it was too late.

So, I guess what I am saying is if you do have ICC, there is a good chance that there will not be any pain or jaundice. Please keep looking around for doctors. Get 2nd, 3rd, 4th opinions. It’s important.

I wish you all the best. Know that we are all here, ready to help in any way we can. You are not alone.

Take care,
Sue

[pattib]

Hi again, and thanks for the responses. What I don’t get, and am sort of afraid of, is if I don’t have symptoms, am not in pain, should I just continue to do this “wait and see” or is it, like I fear, just waiting for something bad to happen and then they can “deal” with that?

[jmoneypenny]

Hi – my mother had intrahepatic and the only way they could make a positive diagnosis was through a biopsy – I know you’ve tried that, but they may be able to target a different area with the cc in mind. My mother also had no jaundice (until the very end), no need for stents, just fatigue and some discomfort in her right side.

I don’t have much info – just wanted to say welcome and hope you find some answers here – and GOOD LUCK! Read up on all the people who have been fighting this and doing GREAT and you’ll feel a little better! As everyone here likes to say, you’re not a statistic, whether it’s cc or unknown primary.

Best of luck,
Joyce

[carol58]

I’m glad you found this site too. My husband Charlie was diagnosed 5/07. He never had jaundice and still hasn’t. I think Charlie’s was adenocarcinoma also – still don’t know origin, don’t guess we ever will. He also had Gemzar with no shrinkage or growth. Please don’t give up. Look into 2nd and 3rd opinions. Charlie was told no surgery either until we found a surgeon who was skilled enough to do it and removed over half his liver in 11/07. Do you have someone in your family or a close friend who can help you navigate through all this? It can really be overwhelming.

Spout off all you want and let us know how things are going for you.

Carol

[marions]

Hello Patti,
My initial response would be to gather the CT Scans, lab results, anything and everything pertaining to the diagnoses and to forward those to other liver cancer specialists for a second, third, or even a fourth opinion. Using the

[celoi]

Hello Patti,

I hope you find answers to your many questions on this site and support.
Sorry you had to come here, but we are here for you.

Stay positive and strong~

celoi (Charlene Eloi) daugher of David Cook

[pattib]

Hi everyone. I just found this site last night and have been poking in every corner!

I was diagnosed 8/1/07 with adenocarcinoma in my liver – of unknown primary (they didn’t know what kind it was) I had a biopsy that confirmed the cancer, but still no origin. So they treated me with several courses of chemo. I’ve had Gemcitibine and Carboplaxin and then Carbo and Taxol. The first batch wasn’t bad, but the second really wore me out, lost my hair, etc.

Since then and many CT scans, they have found no change in the tumors in my liver. No growth, no shrinkage…at all. So they stopped the chemo and for the last 13 weeks (another CT in between with no change) I have been just sitting here wondering “what the heck?”

I have a CT scan tomorrow. My oncologist called me yesterday to tell me she was not going to be there for my appt. next week for the results (AUGGH!) but she told me that she had my biopsy slides re-evaluated and worked with the GI expert who thinks I have cholangiocarcinoma!!!!!

Now I do not have any symptoms. certainly nothing like you all on this board talk about. But then, the only reason they found the masses in my liver (many, 3 main ones up to about 4mm) is because I had a CT scan due to a lingering cough. Recently I’m getting pains in my right side, but that’s it.

Do you know Anyone who presents like this? Am I just so early that I don’t have the jaundice, etc? My doctor told me that if it is cc that it’s “intra” within my liver, not outside and though I’ve had PET scan and many CT’s, nothing has shown up. I don’t know much about my blood tests, apparently nothing to indicate anything specific. BUT the biopsy is confirmed for adenocarcinoma.

Having cancer of unknown primary (it’s called CUP and is rare too) is bad enough, and I am sort of wishing I knew at least what kind of cancer I have, but from poking around on this site (thanks SO MUCH it exists!!) it sounds like I’ve jumped from the frying pan into the fire!

Prognosis for mets cancer to the liver with unknown primary is pretty dismal too. I’m already half way through THAT guesstimate!

It would be a dream if I could consider a surgical procedure – they said a definite NO before, but I’ve been hearing that Mayo will consider it for cc if there are no lymph nodes involved. As far as I know to this point, all of my masses are all over my liver, but no where else.

Anyone have any comments or insight or suggestions for me? I go to the Az Cancer Center (UMC) which is supposed to be pretty good, but with an unknown cancer type no one has really known what to do with me anywhere!

Thanks for letting me spout off, and if you don’t mind, I’ll hang around here for a bit.

[Author]

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