jim-wilde
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I was told that, at least for me, MRI would be the preferred imaging for cc. Unfortunately, I couldn’t have MRI’s BC I have an AICD (pacer) implanted. You should be aware that PET and CT imaging gives the patient HUGE radiation doses. Order of magnitude: one CT/PET equals about 500 chest xrays. My doctors would had preferred MRI’s if they had been possible.
What is your total treatment plan? Does it include surgery?
I had six months months of chemo (Gemzar 2 on/1 off) following a left hepatic lobe resection almost two years ago, and am clean so far.
Welcome and good luck.
Welcome to the site no one wants to find. Where are you located and what treatment are you seeking? It’s important early on to really get moving on a treatment plan involving one of the major cancer centers. There’s not too many cases a year (~2000 in the US), so only big city care has the requisite experience.
Regarding, the gas, I would consult a nutritionist, since a diet change may help with that and the pain. The only symptoms I experienced were bright yellow skin color, very dark urine color, and fierce itching with no rash everywhere, but zero pain.
I live on the Eastern Shore of MD and was operated on 4/2009 at NY Presbyterian in NYC, so convenience was way down on the list of priorities for me.
Good luck in seeking care.
Below is a link to places some of us found to be OK for care:
http://www.cholangiocarcinoma.org/punbb/viewtopic.php?id=3126I have posted my experience at the end of the list.
Rudy, welcome to the site no one wants to find. I too was diagnosed early by a cardiologist based on a high liver enzyme in a routine liver function test. Her suspicion was confirmed by an ERCP at NY Presbyterian, with a left hepatic lobe resection done by Dr. Tomoaki Kato, also at NY Presbyterian. My recovery was almost totally uneventful and pain free. I was off the breathing tube and anesthetic the morning after surgery. That was almost two years ago, and so far, I’m still clean.
Don’t worry about staples. They come out in a few weeks w/o pain.
You’ll be thrilled when they give you some Jello, then some real food a few days after surgery. I had no food or digestion issues, other than you want to keep the quantity down for a few months, but I’m sure chocolate is fine.
The only issue I had was infection that required a month or so of oral antibiotics, which had a price when I began chemo a month after surgery. The combination of antibiotics and chemo killed all the GI good bacteria, which caused dehydration and three days in the hospital getting the blood chemistry back to near normal. Just a bump in the road.
Where are you having surgery?
Best of luck with your surgery.
Has surgery been totally ruled out by an expert? I spoke with a girl today who had been told her cc was inoperable. Long story short, she had a complex ex-vivo procedure done by Dr. Tomoaki Kato at NY Presbyterian in NYC. She’s clean now six months from surgery. His contact info is here:
http://www.cholangiocarcinoma.org/punbb/viewtopic.php?id=3126&p=4Dr. Kato did a relatively simpler procedure on me almost two years ago, and so far I’m still clean. He’s a wonderful and very competent doctor, and as far as I know, the only one in the US doing ex-vivo procedures.
Each of us have to make our own choices. I wish you well in your treatment, whatever it might be. Good luck and bless you.
I exhibited no symptoms until shortly before surgery. Then I had itching everywhere and fluorescent yellow skin color just a few weeks prior. Both of those symptoms disappeared after stents were placed before surgery.
I was very lucky to have a doctor see high liver enzyme level months earlier as part of a routine liver function test AND initiate action to determine the cause. One of the insidious things about cc is that it typically doesn’t display symptoms until it’s too late.
The CA 19-9 level is indeed very high, but the test itself has a fairly high degree of random variability. I wish you well and suggest you seek someone who can treat your uncle, rather than giving up before starting.
Good luck!
I’ve been aware of the CT/radiation issue for some time. When I asked the oncologist (who is the one ordering the scans) about the issue, she really didn’t have an answer. Since I can’t have MRI’s, CT scans are really the only way to know whether cc is being held at bay or not. I figured this out for myself. Clearly she knew about the radiation risks, it is just that cc posed a greater risk. The good news is that there is development being done to produce quality imaging with less patient exposure to radiation.
During my own time of getting lots of CA 19-9 tests, I did some reading up on the test itself. Apparently the results are subject to a fairly high amount of random variance, and the results from any single test should not be given too much weight. What’s more important is the trend over time.
One more odd thought. I had a PET scan in January and they give an IV blast of glucose prior to initiating the scan, which is supposed to ‘light up” any cancers. Guess what? The funky lung feature did not light up! All the more reason for both caution and optimism.
I had zero symptoms when investigations began, triggered by a routine liver function test that had very slightly elevated enzyme levels that my sharp eyed cardiologist saw. She immediately had me cease the statin I was taking and had the same test repeated a month later with the same results. I was then pointed to a gastroenterologist who first ordered an abdominal echo, followed by a CT scan. Then it was on to an ERCP and around that time the glowing yellow and itching began, along with dark colored urine. A week or so after the ERCP, the itching stopped since three stents were placed during the ERCP, color returned to normal. The ERCP confirmed CC and surgery, followed by chemo happened. In my case, if investigation began when the symptoms began, I likely would have been history, the the left hepatic lobe resection took 50% of the liver.
One of the reasons CC is so malicious is often by the time noticeable symptoms appear, it’s too late.
Good luck to you Cathy.
Malc, I’ve never read Wikipedia stuff on CC, and I wouldn’t put too much credence in it. It’s written by non-paid and unsupervised contributors like you and I, and sometimes by experts. I’ve read some topics there that are clearly not true (areas I know very well from professional experience). Unfortunately, with a subject like CC, there’s a huge potential to scare the daylights out of people unnecessarily.
I don’t presume to be an expert on CC, but I’ve survived for almost two years post surgery and still appear to be clean. I have chosen to be optimistic and don’t try to count the days ahead, but enjoy now. It’s just as well we don’t know our whole book ahead of time. There’s just too little data to make very many broad generalizations about CC.
I was treated at NY Presbyterian in NYC and they routinely provide translators to almost any language spoken. My surgeon is Japanese (Dr. T Kato), who speaks fluent English and Japanese, and may speak other languages as well. CC, because of its rarety, is best treated at major NIH cancer centers, and some are better than others for CC.
Good luck,
Dutchess, welcome and I wish we didn’t have to meet this way. I wouldn’t be too quick to rule out surgery (and maybe other treatments like chemo, radiation as well). I had cc in bile ducts and left half of liver. I wasn’t a red hot candidate for surgery (age+cardiac issues). In any case, Dr. T. Kato operated on me at NY Presbyterian in NYC 4/8/09 and I’m still here and clean so far. Dr. Kato has a reputation for operating on patients considered “inoperable” by others. If you’re interested, I can point you to contact info.
Good luck and you don’t have to feel alone. This group is filled with a load of truly wonderful people. God Bless.
Kelly, I am also sorry you had to find us. Whomever suggested excellent care isn’t available closer is totally wrong. I was treated (surgery) at NY Presbyterian with excellent results. In NYC, SK has a great reputation and is one of the NIH major cancer centers, as is NY Presbyterian. Mt Sinai also has a very highly regarded capability. The are a number of potential courses, i.e. surgery, surgery+ chemo, chemo only, radiation, etc.
Here’s a link to stuff in the NY/NJ area:
http://www.cholangiocarcinoma.org/punbb/viewtopic.php?id=5625
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and another useful link:http://www.cholangiocarcinoma.org/punbb/viewtopic.php?id=5625
Time is your enemy here, so I would get your Mom moving on this. I’d be happy to share my experience with NY Presbyterian in detail if you’re interested. My personal opinion is don’t rely on New Haven. I have kids in CT and I know Yale New Haven is very good, but CC is too rare for them to handle, although what I did, living in Eastern Shore of MD, had an oncologist at Presbyterian supervise infusions done in MD following surgery. You will find doctors and hospitals can be quite flexible to suit patient needs.
Best regards,
