Irinotecan / Camptosar Clinical Trial

Thank you all for your suggestions. I will re-post under a new subject line.

Also, I just wanted to comment that I have never been told or no doctor has ever mentioned a cancer and/or tumor marker or CA-19 values. Is that a negative thing? Should I be watching these numbers?

Thanks all,

Linda

Thanks Kristin for putting things into perspective here. I let my emotions carry me away a little too much. My doctor didn’t really say come back to me when you start to die, but that is just how I felt. I know he meant that when the tumors start to give me problems, he would address possible radiation then, but I don’t see why he didn’t address the possibility before they caused problems.

I am definitely looking for another doctor, but don’t want to waste time going to a doctor that hasn’t worked with CC before. You would THINK that being in the Chicago area, it would be easier to locate someone specialized in this. When I google cholangiocarginoma specialist, or variations of that (bile duct), I don’t get much….one particular that I DO get is a doctor that I saw in Feb. at the Univ. of Chicago with my current onc.

I just found Cancer Treatment Centers of America, but it is outside the network of my HMO. That darned HMO is just getting in my way here. Just have to keep looking.

Thanks all,

Linda

Not so good news! Wish it was better to report, but I can’t say that.

My hair started falling out the day after my second treatment. It has been 4 weeks now and I would say it might just about be time to start wearing a scarf or wig. I took this as a sign that the chemo. trial was working because the other 4 chemo meds I took did not produce this effect, even though I was told most would.

I had CT scans after 2 treatments of the clinical trial dose to see if the trial was working and if so, to continue with 2 more treatments. The CT scans actually showed that the 3 tumors in my liver had grown each by about 1-2 cm (in 2 months), and I now have “other numerous tumors” too small to measure. The 2 tumors in my lungs have also grown, and a 3rd has appeared.

I found out again that the chemo. didn’t work, by reading the radiologist’s report on the CT scan. I needed a copy to take to the Univ. of Chicago oncologist for his evaluation (CT’s were done locally at my medical group). My medical group is “really accommodating” when you request copies of medical tests, but they must not think about the patients looking at the results.

My U of C Onc. walked into the office and said in a cheery voice, “how are you doing today?”. He was by himself this time, without the usually students and fellow doctor entorage that usually follows him. I told him not too good, and he countered with “what are we doing for you today?” He didn’t even know why I was there. I asked if he knew the results of the CT’s to which he said no, do you? I told him it didn’t work, gave him a copy of the report and a disk with the CT’s on it and he asked “were these ordered?” He didn’t even remember that he asked me to have them done. He took the disk and report I gave him to look at somewhere else, even though there was a computer in the room, returning 45 mins. later and said “you’re right, it didn’t work”.

He said there was another clinical trial that I could be a part of where a chemo. drug (that was only experimental so far and hadn’t been used outside the clinical trial) was tested to see how food affected it’s effectiveness. I asked about radiation therapy, more surgery, and many other alternatives, but he said “we don’t do it that way” to every question I asked. He did say to come back or give him a call when the tumors started causing problems, and they would see what could be done to make it easier. More or less saying, come back when you start to die.

Needless to say, I’m looking into another doctor, hospital, someone who will look at this cancer in an aggressive way. I have no symptoms of illness, and was told the tumors in the liver are not in an area that will cause problems yet (not near any major veins or bile ducts). They are in the right side of the liver, and my previous surgery was on the left.

I haven’t been able to search for Mayo Clinic yet and how to get “into” there but plan to soon, and I also need to check with my medical group again to try to get a referral either to Mayo or somewhere else. They told me they didn’t make referrals outside of my area, especially not out of state, but I was going to press them for it again. I have an HMO and need referrals everywhere I go. I could have changed to a PPO this past June, but didn’t think I would need to. Now I’m kicking myself for it. I also am going to talk to my HR dept. to see if they will allow an exception for changing ins. Probably not, but it can’t hurt to ask.

I have a plan of attack, I just am not organized with it yet. Since the long weekend is here, I will have more time to work on it. IF my husband takes care of our son for a period of time while I get things together.

Linda