Friday, June 16, 2006

Chemo #4, Davanat Update

I had my fourth Gemzar infusion on Tuesday. I forgot to take my routine medications on Tuesday morning, so I took them Tuesday at bedtime. One of my meds kept me up all night. I couldn't "call in sick" on Wednesday as I had a lot going on that day, and really, I felt pretty good despite little sleep.

Wednesday night I slept very soundly. I went to a meeting yesterday morning and never really woke up. So I came home and slept most of the day and slept really well last night. So I feel better this morning. I was just really tired - one of those low energy days.

I also feel queasy, but not really nauseated. I did get a prescription for Kytril, an anit-nausea medication. I had taken it after my first two chemo treatments - the oncology center gave me samples of it. When I went to fill my Rx for it, no one had it in stock. I found out it is a very expensive drug, but I have hit my deductible so I have no copay. So I was able to get on the Kytril yesterday, and my tummy feels better today.

As for Davanat, I spoke to a doctor at the pharmaceutical company and he said that for the new cholangio trial, they only want newly diagnosed patients who haven't had any chemo yet. The doctor also said there's only one cholangio patient that the Davanat was tested on, although she had very good results. My oncologist also talked to the Davanat doctor. He told both of us that it may be better to stick with Gemzar which has some track record other than try a treatment that there's no evidence for yet. The Davanat doctor also mentioned that at the recent ASCO conference, he heard that there's new evidence that Gemzar may work better than originally demonstrated.

Dr. Bergen and I discussed applying for a "compassionate use" of Davanat down the road if my Gemzar doesn't work out. Dr. Bergen said we may add Xeloda to the Gemazar in the near future which is a chemo drug taken in a pill form.

If any new cholangiocarcinoma patients are reading this, I would consider the Davanat trial. There should be more info posted soon on or contact the drug company at 617-559-0033.

Robert & I are headed to Colorado Springs today to attend a gem & mineral show and to visit friends. We'll be back tomorrow night.

Just up here in Colorado keeping the faith, getting some sleep.

Sincerely, Caroline


The Johnson Family said...

Caroline - thanks so much for your prayers. In answer to your question about Sam's pain medication, I called UAB today and the nurse is discussing it with his doctor. He is on 80 mg of oxycodene every 12 hours but apparently the bone metastasis in the sternum is pretty painful. Hopefully they will give us some more options. Thanks for reading our blog; you continue to be in our prayers and thoughts.

Hoskins Family said...

Dear Caroline,
I thanked you so much for your words of encouragements, thoughts and prayers. I hope that this chemo regimen that you're in is doing its job. You are in my thoughts and prayers.