Today we were scheduled to see Dr. Lang, my Neurologist, at 2:45pm; but we got a call yesterday asking if we’d be interesting in moving the appt earlier so that we could leave town earlier and we gladly said yes. We got there at 11:30am and finally saw him at 12:30pm. It would have been sooner, but their paging system was down and they had a tough time letting him know we were ready. It’s okay though… I had fun lounging on his recliner in his exam room and playing with the tools they use to show things to patients… my favorite was the brain I could take apart and put together and wouldn’t you know it, he walked in just as I got it apart. I put it together again though pretty fast. Seemed kinda easy; just saying.
Anyway, he said that he had spoken to Dr. Conrad, my oncologist, regarding the trials and explained each one to us. He agreed that the Lapatinib and Temozolomide trial is worth trying. The Delta-24 trial is really only for people that have a grade 3 ependymoma. They don’t know if my tumor is now a grade 3 and the only way to find out is to do a biopsy by cracking me open. But if they are already in there they might as well remove it, so it is a catch-22. There are some other factors for that trial that make it a not so great fit for me, so for now, that one is off the table. The last trial, 744, he didn’t know about, so that too is off the table for now. He feels that in the end, the tumor will have to be surgically resected (removed), but since it is so slow growing, the first trial is worth a shot.
So that was it. Decision made. They notified Dr. Conrad that we are interested in the Lapatinib and Temozolomide trial and we should be hearing back from them soon. Apparently we will have to go back to MDACC again to again meet with Dr. Conrad to talk about the trial and all the specifics behind it. I am hoping it is as soon as next week. If we start the trial in the next weeks, at the end of the two rounds of the trial, if no progress is seen and the tumor needs to be resected, it will most likely happen no earlier than August 2010. This will allow us to make all our trips we scheduled this summer! I might feel like crap, but we’ll get to be with friends and family, which will be a huge blessing.
A few last notes… To be sure that this tumor was an ependymoma, MDACC wanted some slices of the tumor sent to them from Washington, DC. I put in the requests to the DoD in DC and MDACC got them, examined the slides and agreed that the tumor was an ependymoma, grade 2. Also, the MRI from yesterday revealed that the tumor has grown a bit more, just 1-2mm in three months, which is slow.
I'll let you know when we have anymore news. Thanks for the prayers and support.