Wednesday, September 16, 2009


Today's visit in a nutshell:

1. It was determined by the nurse practitioner that Mom's current weakness has to do with her Decadron, the steroid that's keeping down brain swelling. Decadron apparently breaks down muscle tissue; it's also associated with weight gain in the form of fat, but in Mom's case, this hasn't happened: far from gaining fat, Mom continues to lose weight. The two rings on her ring finger now hang loosely.

The best solution to the problem appears to be the resumption of some sort of physical therapy along with the addition of protein supplements like Ensure, soy milk, etc. Mom's diet will be changing accordingly.

2. The newest MRI shows good news and bad news. Contrary to Dr. Tonnesen's assessment that Mom's second growth was "growing right through the radiation," it turns out that the second mass is now mostly necrotic, and appears largely black on the scan. So: radiation and Temodar did have an effect. The bad news is that Mom has a new, third growth, this one located close to the original debulking site, i.e., the left frontal lobe. This mass, however, is lower down in the brain-- the MRI image shows it on the same plane as the nose and cheekbone. The cancer is frighteningly aggressive. (Image to appear later.)

3. Dr. Fine thinks Avastin is the best way to go. I voiced my concerns about starting Mom on a procedure like Avastin therapy without even knowing whether her tumor would respond to it; his response wasn't exactly polite-- it was essentially, "If you want to try a different, less reliable method, well, be my guest and good luck." But his point was that, statistically speaking, Avastin offers the greatest chance of significant tumor shrinkage. With a third mass to worry about, one that may very well have done what the second mass didn't (i.e., grow right through the therapeutic bombardment), this seems like the most rational approach.

4. Avastin isn't administered as a pill; it's done intravenously. Mom will have to receive infusions every two weeks, so the current plan is this: let Mom do six weeks' worth of infusions, then bring her in for an MRI. Instead of coming to NCI, however, Mom will visit Dr. Meister, her current medical oncologist. Our first appointment is tomorrow at 9AM. We'll have to leave early to make sure we beat the rush hour traffic.

That's essentially what today's meeting was about. David and Sean were there, too, which gave the rest of us a great deal of moral support. We all took the elevator down to the lobby and discovered, much to our surprise, that Ulysses James was there with his "pick-up" orchestra, setting up for a noon concert. Mr. James has known our family for years; David and Sean both used to play in his orchestra. I had spoken with Mr. James some time ago about Mom's condition, but today was the first time he had seen her since this ordeal began. From his perspective, it must have been quite a shock to see Mom so thin and weak, sitting quietly in a wheelchair with a helmet on her head. I could see the conductor was about to cry; I didn't blame him, but I thought to myself, Please don't cry, sir, or you'll make me cry, too. Mr. James and his wife have both been very kind to our family. Today was no exception: Mr. James took Mom's hand, kissed it, and said huskily, "You are the most wonderful person I know. I love you."

We knew we couldn't stay long, because we needed to get home and schedule the appointment with Dr. Meister. We decided to sit by the orchestra for a few minutes all the same, and while we sat and listened to the musicians rehearse, we received our second surprise: Dr. Leiphart spotted us and walked over. He told us he would be playing with the orchestra today, which made the situation even weirder: it was strange to think of these two gentlemen-- Mr. James and Dr. Leiphart, who are parts of our lives for very different reasons-- actually knowing each other. A small world, indeed.

So tomorrow, we look forward to the beginning of more aggressive therapy. Our thanks, meanwhile, to Mr. James and Dr. Leiphart for stopping by to see Mom. And thanks as well to Kay Wood, who visited today while I was sleeping off my fatigue after getting only three hours of shut-eye last night.



robmx said...

Sorry about your mother. I have terminal cancer myself and my father is in hospice care with prostate cancer at 91.

The reason for my comment is to point out a clinical trial that is taking place in Alberta Canada on your mothers cancer. They are using a chemical called sodium dichloroacetate and say they are having good results though the trials are not complete.

Before I was diagnosed with cancer I bought some of this DCA (dichloroacetate) with the idea of possibly treating my dad with it but never had the nerve to do it. Since I have it and now have cancer myself I have tried it on myself and it reduced my tumor by 30-35% in a few weeks.

It is a powder, a salt, and you take it with a glass of water and it passes the blood brain barrier. You can read about it at...
and the clinical trial using DCA for GBM at

I don't think it is a cure but it might be. The only side affect I have had is neuropathy but I have lowered my dose and that seems to be going away slowly.

Good luck

Kevin Kim said...

Belated thanks, robmx.