Barbara's Status

Click "refresh" on your browser to make sure that you have the latest update

Click here for previous reports

Update on Monday (11/02/2015):

The cat scan last week showed a possible tumor on Barbara's spine, at the T8 vertebra. This had us very concerned, since this is the first indication of the spread of the disease beyond the liver. Until yesterday, there was no pain associated with the new spot. Then, yesterday, Barbara had bad pain attacks all around her midriff and in her back.

Today was the start of the clinical trial for Barbara. With the new pain attacks, Dr. Lenz was unsure if Barbara should start the trial or go directly to radiation. After a long discussion, we decided to start the trial, but get a quick MRI to see the exact status of the disease.

It was a long day at Norris. We arrived at 7 AM for blood testing. Then we met with Dr. Lenz. He was so worried about Barbara's pain that he arranged for an intravenous infusion of Dilaudid. The drug eased the pain, and Barbara was transferred to the clinical trial unit. She was in a normal hospital room, but with a full-time research nurse whose only duty was to take care of Barbara. First came several EKG's, spaced 10 minutes apart. Then, another blood test. Finally, Barbara swallowed the experimental drug (in pill form). After a 2 hour wait, more EKG's and another blood test. At 2 pm we were free to go home.

At home, Barbara was disoriented and nauseous. We don't know if we are seeing effects of the experimental drug, or lingering effects of the pain medicines. She is also sleep-deprived, sleeping only 2 hours last night due to the pain.

We go back for a second dose. We both feel apprehension.

Update on Sunday (11/08/2015):

Barbara had her second day of the clinical trial. It was the same as the first day, with lots of EKGs. Then she had the MRI. It produced a surprise: not only does she have a tumor near her spine, but she has a fracture of a vertebra. This could explain some of the new pain. We don't know if the confirmed tumor will affect the clinical trial.

This week Barbara has another clinical trial session, and an appointment with radiology to discuss if the tumors (both new and old) are treatable with radiation.

With the increased pain, Dr. Lenz prescribed some new pain meds. It has become confusing, with the array of drugs. Thankfully, we met with Dr. Ryan of Pain Management. She made sense of it all, and reduced Barbara's pain drugs to two: one long-lasting daily med, and one short-acting med for breakthrough pain. We're fortunate to have her on our team.

Meanwhile, Barbara continues to take the experimental drug daily. In addition to bowel swings from diarrhea to constipation, she is experiencing generally crummy. It's hard to tell how much of these symptoms are due to the experimental drug.

Last updated on Sunday, 11/08/2015 at 11:00 AM

Click here for previous reports