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Steve had another Dr. Hu appointment yesterday which went fine. Dr. Hu was pleased with Steve's latest lab results (as we thought he would be) and he raised the next dose of Temodar to 250 mg (as we thought he would). Something new Steve and Terry learned was the usual high dose of Temodar is in the 400s, not 250, so Steve will likely have regular increases to his dosing for a while. We don't know yet if the duration of chemo will extend beyond the a year to make up for these months of lower dosing but it seems likely and Terry will ask about that during their next appointment.

Steve's next chemotherapy round starts Tuesday night and goes through Saturday. He has blood drawn again on Monday to check his pre-chemo levels.

His next MRI is scheduled for Thursday, September 13 at 8:00 am followed by Dr. Hu at 10:00 am. Cedars Sinai is going all-electronic with their records on Friday so Steve couldn't get a Friday appointment. He will trade his days off from work to make the Thursday appointments.

Their boys started school last Thursday, Adam at Jr. High and Nathan in a heavy class schedule at high school. They have been making a point of spending time together on their days off. Their next is a museum trip for a Cleopatra exhibit soon.

Big Appointment Day

Today, Steve had appointments at Cedars-Sinai hospital and UCLA oncology departments. Terry, Chrissy  and Greg kept him company. At lunch time Lesley telephoned to tell me Chrissy sent her a text saying it went really well at Cedar-Sinai. The UCLA appointment was later that afternoon. 

When I got home, I called Greg and asked him about the appointments. In between cell phones breaking up, this is what I got:

They met with someone at Cedars-Sinai who seemed very knowledgeable. He reiterated that Steve's tumor should be removed and that it was in a pretty good location so surgery would not likely cause any permanent damage to vital areas. They tested Steve's vision, memory and language and found no impairments (YAY, I'm so happy.... I haven't seen Steve lately and I was worried). Cedars-Sinai also runs a vaccine program similar to UCLA's. They recommend the whole gamut of treatment we have been reading about. Surgery, radiation and chemotherapy.

Greg was not too thrilled with the UCLA appointment because they were expecting to meet with the head of the department, someone named Dr. Cloughesy, but instead they met with a "gal" (Greg's word) from the oncology department who didn't know about the surgery options or clinical trials in other departments. She also tested Steve for deficits and Steve did well. She said her department was running a clinical trial with a drug called Belcade which has had some success. Apparently, it inhibits protein synthesis, thus slowing tumor growth and it also seems to make the tumor more sensitive to radiation. They have someone who had been given the Belcade who has been alive over ten years now.  Ten years is a lot longer than the standard 12-14 months.

Did I write about the vaccine trials in a previous blog? I don't remember. We had heard about this vaccine program which is a clinical trial at UCLA. They take the tumor out and take it off to the lab. They try to make a vaccine based on your own tumor which would then be injected to trigger your own immune system to fight your tumor. Pretty ingenious, don't you think? They heard today that only 50-60% of tumors have the genetic capability of being made into vaccines, so some people can't participate. You don't know until you try, though, right? The folks at Cedars-Sinai, City of Hope and UCLA are all moving forward or recommending the vaccine trial as a possibility. The only negative comment we heard came from Dr. Greene at Kaiser yesterday who said he didn't think the trials were going well and he seemed to be anti-vaccine program.

More good news.... I asked Greg how Steve was doing and Greg said word-finding problems were not noticeable and Steve's headaches were better. He only occasionally needed to take Tylenol for them now.  Woohoo! And since Steve seemed to be stable (likely from the dexamethasone steroid medication) they didn't have to rush into surgery. I take that to mean it's possible to wait until the New Year for surgery when the new insurance starts up (good-bye Kaiser!).

We are all looking forward to Dr. Pikul's appointment tomorrow at Kaiser. Steve had a MRI taken last night in anticipation of the appointment. We want to hear about any changes in size of the tumor and areas of swelling and what Kaiser plans to do to help Steve.

Not too bad a day, I think. We've had worse :)