Test results - now with twice the confusing acronyms

I texted Andi with an I today to get an update and she said someone would be in touch. When we were in the grocery store at 6:15pm, the nurse called Rich's phone which happened to be in the car so of course we missed her. In some ways I'm glad she left a voicemail versus talking to us while we were in the produce section of Food Lion with a three year old. I was able to play her message several times and transcribe it. I have no idea what it means but Rich and I heard very different versions of the same thing. His version was basically, "we found cancer but there's no room on the bus for you so go with God."

The nurse (Donna) said that they completed the molecular profiling and found two mutations - KRAS and GNAS.

There are two clinical trials that they have at the Sarah Cannon Cancer Center. One is an oral medication that combines a MEC and AKT inhibitor. The other "hits the ERK pathway." (I have no idea what that means. Is that what the kids are calling it these days?)

Neither clinical trial has an opening at the moment but Rich's name has been put in for when one becomes available. Dr. Bendell is also looking for other solutions in the meantime. Donna will call us again on Wednesday to try to reach us in person.

I know those terms are right because Google confirmed them, but I have no idea what they mean. I might give my PubMed account a workout or I might just hope for a better translation in the morning.

No news

We're all alive here, I just haven't been up to posting much. It's been busy with our huge annual conference a few weeks ago and all the prep for our huge SCA event that was yesterday. Now I feel like we can all breathe a little more. I don't even remember when we went to Nashville ... oh, right, March 14. When we were there, Andi with an I (our patient navigator) said that we should have test results in a few days. I was doubtful, based on the findings from University of Maryland where the number of cells was sparse. I texted on the 21st and they said, "had our biomarker guy talk to the path[ology] group and they said they can do the sequencing." No idea what that means, but it sounds like they're working on it. I texted again on the 29th but Andi was out. On Monday April 1, Andi said, "still haven't heard back but we are looking into it. Stay tuned." So then this Friday the 5th, I asked again and Andi said, "Just checked again. No word yet. Maybe path group is backed up? Dr. Bendell is having people look into it."

So no news, really.

Meanwhile, I went to California for work, came home via a red eye flight and then took Rich to an endoscopy. Ever since the MoAS (Mother of All Surgeries), he has had mild indigestion and frequent burping. No one is really sure what causes it, but they wanted to put a camera down his throat to look around. They found nothing wrong (which was a relief to Rich) but did notice the bottom of his esophagus is slightly inflamed, in keeping with acid reflux. But that's all we know about that so far and no one can yet explain why Rich burps more.

We're in a bit of a holding pattern.

Last week, Rich caught some sort of stomach bug that laid him up from Wednesday through Friday. I was a little concerned he wouldn't make it to our big SCA event, but in the eleventh hour he rallied. Now we're home, the car is unpacked and we're back to life as usual, including another conference this week.

While no news is supposedly good news, it would be nice if we at least had something that helped us move forward.

No answers yet, but one heck of a plan

While it's only been one day here, Nashville certainly has a culture all its own. They love them some rhinestones here. Also, everyone has a guitar. You get one at birth with your rhinestone onesie. We made it to the Sarah Cannon Cancer Center way ahead of schedule. It's right next to Vanderbilt University but on a pretty run down street. There is a giant Parthenon across the street, though, so there is that.

Our belly slime Mecca

While we waited, we were treated to homemade breads from a woman who apparently is there daily passing out treats to patients and their families. She was super sweet.

Free bread

Rich had some blood drawn and then we went to an exam room. We then were visited by the Charlie's Angels of medical team. Jan came in wearing shoes I would never dare try to walk in to go over Rich's history. Next came Dr. Bendell herself in an alarmingly short skirt and quite the silver chain around her neck. Then came Donna in her leopard print shirt with rhinestones to have us sign the case study paperwork. And finally we met Andi (with an i) in fishnet stockings to explain how she was our direct contact for everything. When she left, Rich surmised it's either Ladies Night at the Research Institute or they're shooting a tawdry film in another room.

Everyone was super nice and they move at a very quick pace. Dr. Bendell said that they want to test Rich's tissue using their panel of tests that covers 35 different types of malignancies (versus the K-RAS test we could never get done that only covered one or a few malignancies). She felt confidant that the test would give us the information we need to target Rich's treatment for the malignant cells that are there. She also mentioned that no one else in the country has the same level of testing except for MD Anderson Cancer Center in Houston. We noted that Southwest flies to Nashville direct so we're good with Sarah Cannon.

Bendell offered that we could stay over tonight and have the biopsy to extract more tissue Friday morning but we are completely unprepared seeing as we have no luggage, no medications, no clean underwear and no backup plan for all our other commitments this week. So we opted for a biopsy on Thursday the 14th. Rich will fly in Wednesday the 13th for a pre-op appointment with Dr. Geer (his name is Richard Geer, I am not even kidding) and I'll fly direct to Nashville from my University of South Florida site visit. He'll have the biopsy done Thursday morning and we'll fly home that night. The biopsy is laparoscopic where they fill you full of air to see better and then harvest a bunch of tissue. Since the sample they had in Baltimore wasn't enough for even a K-RAS test, Dr. Bendell suspects they'll need their own sample anyways so we're going that route.

Once the sample is retrieved, they should have results in one to two weeks. And then from that we should know what treatment options we have. Everyone was very positive and upbeat. I feel good about the plan.

Rich got a little bit of the puffed out upper lip for a bit (which makes him look just like his father) as he pondered all the negative ways to digest the plan. But I won't have any of that and the facial expression passed. I wore my slime shirt special for this trip.

Slime shirt

As we waited for someone to come back to the exam room, we could hear this dude out in the hall talk about the treatments he's been getting. They are injecting molecular radiation into his arteries to attack the tumor in his liver. It was working like a charm and he said it didn't even hurt. We are living in the future.

Also, Andi (with an i) gave us her cell phone number and I spent the afternoon texting back and forth with her arranging our trip for next week. She is my new BFF and I have her on speed dial. Again, how did we treat illnesses before smart phones? Got cancer? There's an app for that.