latest scan

Yesterday we met with Dr. Lai (part of Dr. Claughsey's team) at UCLA.
Mark has been complaining of increased seizure activity where he gets the euphoric feeling accompanied by a little loss of control on the right side of the body. He says that he often feels "right on the edge" of getting a seizure. He had an MRI in the morning and when we all reviewed it, the scan is still looking good and the cavity is still shrinking and the questionable spot seems to be getting smaller as well. There's nothing in the scan that explains the seizure activity and it could be due to the brain still shifting around to try and fill the cavity. To help with the seizures, they do not want to increase his seizure medication (Keppra) over 3000mg which is his current dosage. We could leave it alone, or add on a new seizure medication (topomax?, tegretal?, neurontin?). We chose to try neurontin as a supplement to keppra to see if it helps the way Mark is feeling. Mark feels like more rest may help as well, if he gets 8 hours he generally feels pretty solid so he will also try to make sure he gets to bed early. There don't seem to be any side effects from vaccine or no noticeable changes. The doctor seemed eager to get Mark back on Temodar and we will be consulting with Dr. Liau on Wednesday to determine when he can start up again. We will get another MRI scan in a month. Vericose vein concerns don't seem to be an issue, as a follow-up, we did have an xray and ultrasound and there didn't appear to be any complications or clots and they actually claimed that Mark "had really nice veins"! We also talked about seeing a neuro-psychologist and will be in contact with Dr. Tom Colita (one of the speakers at the brain tumor conference).

What's next:

05/08/06 - MRI and meeting with Cloughsey
05/10/06 - 2nd injection of dendritic cell vaccine
05/24/06 - last injection of dendritic cell vaccine
06/07/06 - follow-up blood work
06/07/06 - tentative MRI & visit with Cloughsey

first injection

Mark had his first injection of the vaccine this past Friday; however, nothing much to report...he said it just felt like a shot! He had to wait in the office for about 2 hours to make sure there wasn't any reaction and we are continuing to watch him at home for any rashes or anything out of the ordinary.

About a year or so ago, Mark noticed some veins that seem to have collected on his knee. They look like vericose veins but we're not sure and they don't seem to bother him. They are about the size of udon noodles and looking at pictures on the web, it looks like it is vericose veins. We had a friend recently have a complication relating to something similar, so now we're concerned about these veins. We're scheduling an appointment to have these looked at and all of our doctors have been alerted.

Coming up:

05/08/06 - MRI and meeting with Cloughsey
05/10/06 - 2nd injection of dendritic cell vaccine
05/24/06 - last injection of dendritic cell vaccine