January 5, 2010 Update
MRI January 5th, 2010
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I have had a lot going on lately in the middle of the holidays regarding medical tests and treatment options. As I’ve written lately, I’ve continued to lose function in my left arm and hand. This has been concerning to me considering that the decline has been fairly rapid meaning over the last 90 days. Since I got out of the hospital when I was treated for the cold I had, I started back on avastin and two weeks ago Thursday I had a DC VAX injection. I came off of Valcyte for a period of time since my blood counts were very low and I’ve started back on that as well.
Yesterday morning I had an MRI. This MRI showed increased enhancement around the tumor. It’s unclear at this point whether or not this is tumor growth, a stroke that has occurred, Gamma Knife continuing to kill cancer cells in the area of the motor strip which is resulting in neurological deficits or edema. Regardless, I will start on a new chemotherapy next week called carboplatin. This is an IV-based chemo that has similar side effects as temodar. I will continue with DC VAX, Valcyte, and now carboplatin. Today, I am meeting with my neurosurgeon and we will discuss if there any options at all surgically. My guess is there are no options at this point but there could be later. Any surgical resection well further involved the motor strip and the likely result will be a complete loss of the left side of my body. If that becomes necessary later in the choice when faced with this paralysis on the left side versus succumbing to this disease obviously the decision is simple. However at this point if there are other treatment modalities that can keep the tumor at bay than that is the obvious and preferred course to take. I will have input from neurosurgical point of view later and we will start putting the picture together.
It is somewhat like being at the beginning again. If you’ve kept up with the blog from the beginning you might recall that I had a decision to make between watching and waiting or performing surgery. After obtaining three opinions I went forward with surgery. In this instance I will likely reach out and obtain a second opinion from the University of California San Francisco. For anyone embarking on this journey I highly recommend that you do the same. It’s not a pot shot at your neurosurgeon. You’re just being your own advocate and ensuring that you’re making the most educated decision that you can. After all if you are facing the prospect of being paralyzed, you best be as well-informed as possible. I believe I am far from a scenario however we are prepared for anything as we have been all along. We have had enough ups and downs over the last three years to know that anything can change on a dime. Honestly, avoiding surgery is the goal and every neurosurgeon’s goal is to increase neurological function, not decrease it. That is what’s difficult about my case and other people’s cases. As is the case with many brain tumor survivors, I came from a position of being a high functioning individual. I operated in a high functioning professional environment, lived a good life, could run, throw a ball to my son, etc. and I’m losing function (I can still hammer a soccer ball to Aidan). Some people come from having minimal functionality because of their deficits and surgery actually improves their situation.
I will update my blog when I have more information but it may take a day or two. Typing is the challenge and I’m experimenting with some dictation software which is a huge help.
Best to all of you.
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Mark,
Just checking in on you and wanted you to know that I’m praying for you. As always your posts both inspire and force me to think a bit deeper than my comfort level…thanks.
Praying you have a remarkable 2010.
Oh Mark, I am so sad that you are experiencing yet another HURDLE! KEEP FIGHTING!!! And get those second and third opinions. Have you considered Dr. Henry Friedman at Duke? I saw him several years ago and was so impressed and of course he and the Brain Center at Duke have an outstanding reputation. David Bailey (http://www.davidmbailey.com/home.html) another musician with a GBM who was given only 6 months to live 13 years ago is being treated by Dr. Friedman. I wrote primarily to tell you that last fall when I had necrosis/edema from radiation near the motor center and was nearly incapacitated, I used the Windows Speech Recognition program that came with Vista. It was AMAZING. From the first moment I sat down, I was using it, with almost no errors. Like you, I had some use of my left hand, so could correct the occasional error. It made my life during recovery bearable – to be able to communicate with family and friends and to my support group was my lifeline. Fortunately, with high doses of Decadron, the edema subsided, I entered therapy, and today am almost back to normal.