Post Surgery Follow Up

Today marks the 10th day since the surgery, and Ken is doing great! He has "ditched" the walker completely, and is getting back to his normal self. The physical therapist finally came today, and she has no plans to see him again! An occupational therapist is scheduled to evaluate him on Sunday, but I anticipate pretty much the same results. We had an early morning today, Ken had an 8:00 am appointment with Dr. M in New York, followed by the removal of his stitches. Sooooo...the appointnment was much more complicated than we had expected. The pathology shows that the tumor was, in fact, a grade III. There is now a decision to be made about further medical therapy. Because the resection was so successful, and Ken is young and in good overall condition, the Dr. feels that this may be the time to pursue more innovative therapy. This would be in the form of a clinical trial. Other options include going on a daily "maintenance dose" of Temodar (the chemotherapy that he has been on previously) or another form of chemotherapy, which may carry greater side effects. However, the Temodar is readily available, and he could go on that at any time. There is also the possibility of the clinical trial that we had previously been considering, which is a combination of the drug Avastin, plus radiation; however being on the Avastin would make him ineligible for future therapies. We could also check into clinical trials at Dana Farber or NCI. Or there is a clinical trial opening this week at MSKCC that our doctor has suggested. This would involve receiving a drug via IV once a week (in NYC) as well as an oral medication to be taken daily. There are 3 spots available, and one is reserved for Ken; however, if he declines there are about 10 people in line behind Ken waiting for those spots. So we would need to decide and fill out paperwork on TUESDAY, and likely start trial on Wednesday. The trial would run indefinately...until the tumor reoccurs...so once a week for months or possibly years. Side effects include elevated cholesterol, acne-like rash, mouth ulcers, etc. Oh, and the potential for a "brain bleed", so he would need an MRI after first dose. "No Pressure" but we have to decide NOW. His doctor feels that if he is going to participate in a clinical trial at some point, this is the time to do it...often it is easier to qualify after the first or second recurrence, rather than later on. And this therapy would not close the door on future therapies. Also, it seems easier to prevent a reccurence, than to get rid of a tumor that has already surfaced. So those are our options, at least as I interpret them. We are a bit overwhelmed, so if anyone has any questions or suggestions, I would appreciate it!