Bad News!

On a regular Friday MRI appointment, Steve and Terry went early for the actual MRI, followed by their appointment with the oncologist, Dr. Hu. This time, however, it was 10:20 before Dr Hu came in. They could tell by the look on his face that there was bad news: Steve has new tumor growth.

The new area has too much growth to just be scarring from the previous gamma knife radiation. Now they believe there is a 1 cm x 1 1/2 cm white, wormy shaped, (kind-of like a letter "J") tumor curved towards the old gamma knife tumor. The old tumor which was gamma knifed was 0.7 cm in size. Where it started they don't know,  possibly a hair of tumor that was missed by the gamma knife or maybe the dot that was seen the month before, or just an unrelated spot. When Steve asked what symptoms he might experience from this new tumor, he was told he might lose his balance and he might have trouble reading, that is, not comprehending vocabulary properly. So far, he has no symptoms.

Options for this tumor:

Dr. Hakimian had already looked at the MRI and said they can't re-do gamma knife as it's too close to his prior location. There is a meeting of the Cedars-Sinai Tumor Board this Wednesday where many doctors will discuss what the best options will be for Steve.

One possible trial is a "gamble", from Terry's description. It's an anti-PDL1 antibody
1B trial at Angeles Clinic  but one can't do normal chemotherapy so Steve ruled this trial out.

Another option is the NovaCure helmet but it is secondary to others, according to Dr. Hu. There are thousands of options but the goal will not be to eliminate the tumor, just slow the growth of this aggressive tumor which showed up quickly between monthly MRIs. Terry says this is a different mindset now. Scary stuff.

In addition, they are planning to send out a piece from his old, frozen, tumor which has been in storage at Cedars to map his tumor. Something about a y chromosome and to look for some hormone.  She was going to get more details for us about this.

Terry says they discussed the options and chose the established practice of Avastin with Temodar, preferred by Dr. Hu. Avastin is a drug that inhibits blood flow to the growing tumor. They hope to be scheduled in 1 to 1 1/2 weeks to start the Avastin process. The appointments will be every 2 weeks and given by IV at Cedars hospital. The first appointment will be a 1/2 day session. The second appointment will not be as lengthy, and by the 3rd session onward, they will only take 90 minutes each time. The side effects are expected to be low to Avastin, and one small complication is the smaller blood vessel effect makes the contrast dye injected for MRIs harder to get in to tumor areas, possibly masking new tumor growth. They expect to search harder for new tumors in future MRIs.

Terry says Dr. Hu is very positive and that they were expecting tumors to occur in new places and to have other recurrences. She says he gives us all the options, he's always positive, he says "let's try this first" and he walks it thru for them.

Steve has no symptoms and is going to work every day. Earlier in the week he had a 10 minute bloody nose. It was week 4 after his last round of chemotherapy when his platelets were low, so he was slower clotting. Speaking of labs, the last two results were on the usual side for a person on chemotherapy:

                7/23/14         7/30/14
wbc            4.3               4.7
rbc             4.68               4.8
hemoglobin 15.2           15.6
hematocrit    45.1           45.3
platelets    145,000     123,000
creatinine     1.2              1.2
BUN           20.2             15.5

Steve starts his normal Temodar dose at 300 mg as before this week. The next MRI is planned for October first.

Terry is planning to fill out an application from the Jack and Jill Foundation. She says Dr. Hu gave it to her  a few appointments ago when Steve had his recurrence before the gamma knife. She says it's like the Make-a-Wish Foundation, only for adults. She didn't fill it out before because they were going to be healed after the gamma knife. Now, she'll see if they can request a trip to Kauai as Steve has been wanting to go for years but it was a bit too pricey for their young family.