Friday, January 11, 2008


Again - no pictures -- gotta get back to quilting!
So, we spent all afternoon in Madison, WI at the UW Cancer Clinic. We met Dr. Mehta (boy did I have the spelling on his name wrong!). He is fabulous. He is the Radiology Oncologist and one of the best in the WORLD. We met Dr. Robbins -- he is a neurological oncologist -- he literally idolizes Dr. Mehta (vbg). He told us Mehta was one of the top 3 in the world (and he considers him #1). Anyway....
Kim (my daughter-in-law is very organized), brought along the CD's that were made from the MRI's and CT scans and all the reports, and the actual tissue specimens of the tumor. Steve also had an MRI of his back the night before, so Dr. Mehta wants that too. (That MRI showed mild disk degeneration -- not at all involved with the tumor as far as we know). Dr. Mehta wanted his surgeon to look everything over and talk to us, but he was involved with another patient/family and couldn't get away yesterday.
Dr. Mehta is very surprised about the diagnosis. He sees Glioblastoma's in much older or much younger people. They will have their own pathologist (that only deals with brain tumors, nothing else) look at the specimens. If it is a different kind of tumor, the treatment is different. If it is a GBM, Steve is eligible for a clinical trial that is being done world-wide.
Steve is going back tonight for an MRI at Madison -- his surgeon here scheduled one for 6 weeks after the surgery, but Dr. Mehta wants one now to see what's what -- so he can compare the ones before surgery and this one after.
We have an appointment next Tuesday with both these doctors and they will have the results of the MRI, their pathologist's report, and their surgeon's input from the MRI's. We are not to make any assumptions. We will know what they know then.
They want to start treatment soon -- as in 3 weeks from the date of Surgery, which would be about the 21st. Treatment for this tumor and the clinical trial is radiation for (they say 6-1/2 weeks, but Dr. Robbins said 42 days, so that would be 8 weeks 2 days), and an oral chemotherapy drug at the same time, then a month rest and then 5 days of the chemo and 3 weeks off for 6 - 12 months or 21 days of the chemo drug and 1 week off for 6 - 12 months -- (this is the trial -- a lesser amount of the drug for a longer period of time and we will know whether he is the control group (5 days) or the trial (21 days) because they don't do sugar pills -- they do the gold standard of treatment or the trial -- which would be a win/win situation. Also -- although this treatment is covered by their insurance, if he does the trial the drugs are free. And the radiation treatment will be done in Madison, so it means driving Steve there 5 days a week for the duration -- but we'll work it out among a few volunteers (it's about a 90 minute drive).

Anyway -- so that's where we're at -- we'll know a lot more next Tuesday. And today, he gets the 30 staples removed! His back is better, but not totally great yet. All of us are looking forward to a quiet, relaxing weekend though! (And I'm looking forward to maybe firing up the longarm!)
The snow/rain didn't start falling til we were back on the road home, although it was a mess for Kim to have to drive through.
We were all impressed with Dr. Mehta and feel UW-Madison is the place we want to continue treatment.


Jen said...

It sounds like it was a successful trip. Any doctors that can you can put your faith into are a blessing. It sounds like to these guys your son is a person and not just another patient.

I'll be keeping you alli n my prayers.

Kristie said...

Well, I think it all sounds very promising! It will be so hard on you all going through this, but you will always be in my prayers.