Bad Rash

I developed a very bad rash this week from the sorafenib and saw my oncologist in Grand Junction today. I'm taking a prescription steroid, benadryl, vitamin B-6, as well as a skin creams, all of which already seem to be helping just after the first dose. My oncologist recommended that I go off all the supplements that I'm taking just to make sure it's not interfering with the clinical trial medicine. The rash is not bad enough that I have to quit the sorafenib. They tell me that this rash means that it is working.

I have a red rash on my face, neck, shoulders, chest and back. Fortunately, none of it itches; however, my scalp is tender and does itch as well as a few unmentionable places. I have a sore in my mouth. The palms of my hand and soles of my feet and dry and tender.

If the rash gets worse or doesn't respond to the treatment, I may have to go off the clinical trial drug, until it subsides.

On the up side, I've had more energy since starting the sorafenib. I'm not getting as tired as I was.

If anyone out there has had similar experiences, please let me know.

So far, so good

I started on the sorafenib clinical trial last Tuesday, so today is Day 4. So far, no real side effects - just a few little minor things, like feeling a little jittery in morning after first dose, or my skin turning red & purple after a hot shower. (Usually, it does turn red.) I will be monitored by my local GP and my oncologist. I will see one in two weeks, the other in a month, and we will alternate these visits. We won't really know how the medication is working until I have a scan at the end of next month.

I get really tired in the evenings, which I find irritating because I just can't do as much as I used to. My husband & I make a concerted effort to go to bed early and get plenty of sleep. The tiredness started before I started taking sorafenib.

I do feel well enough, that I am heading to Utah with him this weekend for a rockhounding trip. We'll be looking for geodes and petrified wood. I will probably rockhound part of the day, and read, crochet, or nap in the truck the rest.

It's a beautiful morning in Ouray. I've come to cherish the sunny days because I don't know how many more of these I'll get. But if I have anything to say about it, many, many more!

Headed to Dodge City, Kansas this week

Unless something comes up in the next few days, I have been accepted into a clinical trial to test Sorafenib, and oral medication, to see how it works on cholangiocarcinoma. Sorafenib is already approved and being used quite successfully on renal (kidney) cancer. The trial I will be in is in Phase II, so everyone in this phase gets the drug.

We will meet with the clinical trial people on Thursday, March 16th at the Cancer Center of Kansas in Dodge City. It looks like we'll need to go to Kansas about once a month. Some of my follow-up tests will be done in Colorado.

My oncologist wrote a letter to my insurance company to ask them to cover my costs in participating in this trial which includes blood tests, check-ups, and scans to monitor the results. The insurance company has agreed. God bless my oncologist! The drug is provided by the clinical trial, and we are getting help with travel costs through the American Cancer Society.

Wish me luck that the drug works!

Initial Entry

My name is Caroline Stoufer and I live in beautiful Ouray, Colorado in the southwest part of the state. Last fall, I had some minor abdominal discomfort and thought I might have gall stones. I could feel something in the upper right quadrant of my abdomen when I took a deep breath. Unfortunately, an ultrasound revealed a mass in my liver. I had a needle biopsy a few weeks later, and I was told by my local doctor on October 28th that I had cancer in my liver which the pathology indicated had metastisized from elsewhere. I had a bunch of tests to try to find the primary cancer and nothing came up. My oncologist, Dr. Michael Bergen, at St. Mary's Oncology Center in Grand Junction referred me to a surgeon, Dr. Martin McCarter, at University of Colorado Hospital in Denver.

Dr. McCarter removed my "hairball" on November 30, 2005. My tumor was about the size of an orange and they took half my liver which has since grown back. They found cancer in my liver bile duct and I have been diagnosed with cholangiocarcinoma. They also found cancer in one of nine lymph nodes sampled, so I was cautioned that the cancer would likely come back. I spent eight days in the hospital, and after those first few days of surgery, it was an effort to even open my eyes. It was great to get home, but I felt like I'd been hit by a freight train for the first month after surgery.

Three weeks after surgery, I had a check up. I had a fluid build-up in my chest cavity. They drained two liters of fluid from me which look liked an amber ale. After that, my recovery went very smoothly and quickly, and after two months, I felt back to normal and then some. My oncologist did not recommend chemo at that time.

In January 2006, I went to the local integrative medicine clinic and consulted with Patty Ammon, MD. I began taking six supplements: N-acetyl-cysteine, omega 3 fish oil, folic acid mouthwash, Co-Q-10, mushroom extract, and vitamin C in large doses. My oncologist told me at a check-up in February that the vitamin C could actually promote tumor growth, so I quit taking it. I also take a Flinstones multi-vitamin everyday.

In February 2006, I had a PET and CT scan, and I have several small tumors in my liver. We expected a recurrence, but not so quickly. My oncologist and surgeon have recommended that I participate in a clinical trial for sorafenib. The nearest place the trial is being offered is in Dodge City, Kansas which is a nine hour drive from here. I'm in the process of getting my medical records to the clinical trial, and I will have a blood test this week so they can check my blood chemistry. Keep your fingers crossed that I get in the trial and that the drug works.

I am looking at other trials as a back-up plan. We're also looking at chemo and radioactive seeds in the hepatic artery as possible treatments.

Thanks to so many friends and families for your prayers, cards, gifts, and support of all kinds. It is the best "treatment" in all of this.