Out of Heart

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medical          *

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The Smith Islanders use the expression “out of heart” to describe a state of discouragement, disappointment, or depression. Looking back on the last week, it’s a reasonable description of where I’ve been since my last chemotherapy treatment. I described my miserable weekend where I was unable to appreciate the NFL Conference Championships. For the past week, I felt overwhelmed by an odd, faint, noxious smell. The thought of writing in the blog was a turn-off.  I have been too weak and short of breath to climb the stairs and have relied upon the elevator that the home builder installed for his wheelchair-bound wife.

At the time of my 4^th round of chemotherapy on Dec 30, the drug “Alimta” was substituted for Taxol. The reasoning was that the combination of Carboplatin, Taxol, and Avastin had not arrested the disease.  Therefore, I no long met criteria for the study which continues to be open to those who get some remission of illness and then go on to test a maintenance treatment. So, the 4^th round was changed to Carboplatin, Alimta, and Avastin.

The 4^th round seemed to be the easiest with respect to chemotherapy side-effects. However, my pain level shot up particularly in my left chest and mid-back. On my 5^th round, my last visit on Jan 20, Dr. Neal told me that I had gotten the four doses of Carboplatin and had likely reached maximum benefit.  He believed that Avastin was not likely to be offering much and we decided on Alimta alone for the 5^th and 6^th rounds.  After the 6^th round, I would be offered another clinical trial.

I’m currently rethinking this strategy. Chemotherapy for this stage of the disease is more about “quality of life.” Chemo is minimally effective for extending life. Its major purpose is the reduction in symptoms that arise from the tumor and it’s byproducts—most recently that has been back and chest pain. But I’ve just gone through more than a week where the side-effects from the chemo took the joy out of every day. And, as far as pain control was concerned, I seem to have stopped receiving any benefits from chemo a few weeks ago. In order to achieve pain control, I am using large doses of opiates via fentanyl patch and I’m receiving local irradiation to the spots in my lumbar spine and left chest. These local treatments appear to be working.  I’m not sure of the likelihood that the treatments are contributing to my symptoms.

So, why continue chemotherapy? If the purpose is not life-prolonging but symptom sparing, and if the therapy is not sparing symptoms, and if the therapy appears to be causing symptoms and reducing my number of quality time, what is the rationale for continuation? How likely am I to catch a break that will increase time or quality without an exorbitant penalty in side-effects?

This is the issue that I will be focused on for the next few weeks. Stopping chemotherapy might make me eligible for enrollment in hospice. I’ll discuss this with Dr. Ward who manages my pain medication and is a medical director for a local Hospice. I’m particularly anxious to speak to Dr. Palchak about this. He is in his early 50s and  he has a wealth of experience with this cancer. I’m hoping that we can sort through the facts together and incorporate my preferences into another treatment plan.

Sunday January 29... It is early afternoon. It's a beautiful day on the Central Coast. I wanted to let people know why there hasn't been a recent post. If I'm feeling well enough, I'll get back to the blog tomorrow.