The Hope Lodge

This whole post is just one huge photo dump. The Hope Lodge here in Nashville holds 41 rooms for guests, each that can hold three people (one double bed and one twin). It's nothing fancy and the room smells a bit like old lady, but there are a lot of old ladies around here, so that's logical.

You do have a private bathroom, but you are not allowed to have any food or drinks in your room. (I kept orange juice for going low and the front desk lady just said don't tell anybody.) There are so many residents with lowered immune systems they don't want to risk mold or allergies or anything in the rooms. All food has to stay in the kitchen and dining area on the first floor.

But the kitchen area is pretty cool. They have a wall of large fridges for guests, an ice machine, filtered hot and cold water, coffee machines, pantry space, freezer space, a fridge just for meds, and four distinct kitchen areas. There are three gas grills out back for grilling or dining al fresco. And everyone is incredibly sweet.

Each floor has a day room with puzzles, a TV, and several couches if you're tired of being in your room. There's also a laundry room with washers and dryers. There is no laundry service here so you have to wash your own sheets and towels.

Everything is completely free. There's wifi, DirecTV, donated snacks, an exercise room, free parking and it's across the street from the hospital complex. My only complaint is the stairwells are a little creepy. There is a security guard on duty at night and a front desk attendant until 10pm. There is a free shuttle that will take you to any appointments within the medical complex.

This is the first time I've seen for myself what donations to the American Cancer Society do. We almost didn't get a space here but were called as soon as we landed in Nashville. The Hope Lodge is saving us about $750 in hotel costs (and that's at the medical necessity rate at the Holiday Inn). This last minute trip was not cheap, but it is now significantly cheaper thanks to the American Cancer Society.

We are very grateful.

Science!

Or how to tell a cell protein that he should stop calling. We're just not that into you. There have been a lot of acronyms and medical terms floating around lately and it's been a bit of a jumble, but it's finally starting to make some sense. First, let me show you the picture Dr. Bendell drew for us.

Kudos to her for drawing all that upside down and she talked to us.

The big circle is a cell and the circled N at the bottom is the nucleus. Remember that for growth to happen, cells have to divide or produce something else. What makes cancer a problem is that those cells grow faster than normal and they don't know when to quit. In Rich's case, the cell is question is a tumor cell from his appendix that is desperately trying to produce slime. There aren't a lot of those cells, but they are creating a big messy byproduct all over the place.

Ok, back to the picture. All that alphabet soup inside the cell is a collection of proteins. They create pathways to the nucleus with information telling it what to do, generally if it should grow or produce something (e.g. slime). Let's focus on the list on the left. It says:

RAS RAF MEK ERK

In real life, the road is a little more winding, but you can pretend it's a straight line like that. Dr. Bendell called it a telephone game, where RAS tells RAF tells MEK tells ERK that tells the nucleus to grow. Rich's RAS is mutated (hence the M pointing at it) and stuck in the on position so it just keeps telling the proteins below it to keep producing. If he had done the monoclonal anti-body treatment they discussed in Maryland, it would have done no good because it targets stuff right outside the cell (that Y looking thing). RAS would has kept on spamming down the line and the cells would have kept producing.

The drug trial we are going to start this week inhibits the ERK protein, so that it will hopefully ignore the repeated messages of the mutated RAS protein and ideally the nucleus would chill out and stop producing mucin. The cells that we're targeting are the appendix cells that got scattered all over Rich's abdomen and are mutated and constantly deciding to make more mucus. If we can tell those cells to chill out, then the mucus won't grow. There is also a hope that without growth, the mucus could slowly be reabsorbed back into his body.

Those letters on the right are another pathway to the nucleus. It is possible that if we block the ERK, the cell could get all huffy and find a new way to tell the P13K to tell the MTOR to tell the AKT to tell the nucleus to grow. The other study Dr. Bendell was investigating was one that targeted both the MEK and the P13K proteins (so both pathways), but that trial isn't available until July and she didn't want to wait that long. They did not expect to have an opening in the ERK trial but one happened on Thursday so they eagerly jumped on it.

As Dr. Bendell said, if we can get to the point where there is no growth with this drug, she's happy. If we find that there is actual shrinkage then she's extra super happy. But we have to just play it by ear. If the drug makes Rich feel awful or he's just tired of flying to Nashville, we'll reassess. But for now, this is the best plan.

We talked a bit about the strong language in the trial. She laughed and said they all sound like that but she feels like this is very safe. She said the drug companies will be all spastic when a drug is first being administered and she will tell them, "Yes the patient received the drug. Miraculously, the patient's head is still attached!" Everything is super new technology, but we feel safe.

Tuesday is the day of a thousand pre-trial tests. Rich has an eye exam, MRI, x-rays, and a CT scan. There is a slight chance we could start the drug trial on Wednesday but they need a room to be available. Right now it looks like Wednesday will be our day to work from Tennessee and then start the trial on Thursday.

I'll update more on our accommodations and other interesting details of this trip, but as Ian would say, I'm tuckered after all that. And we thought we would never use biology in the real world.

We got the call and are heading to the show

Everyone assumes that waiting around must be the hardest part. I can attest, though, getting the call to action on a Thursday afternoon can be a little unsettling too. Donna the Nurse called around 2:45pm Thursday to tell me Good News! There is an opening in a drug trial if Rich is interested in participating. What's not in the brochure is you have to show up on a particular day to start the trial. That day happens to be this upcoming week. Yes, she was calling on Thursday afternoon to see if we could be in the office on Monday afternoon. We said yes. $2400 later and we're set for our trip.

Reading all the details on a drug trial is not exactly fun. I'm not sure who writes these things but they need to work on their pacing for dramatic effect. "You are being invited to volunteer for a research study because you have advanced cancer for which no therapy exists that is curative and the standard drugs to treat your disease are no longer effective, or there is not an effective treatment known for your type of cancer." Technically true, but not really how you want to lead.

The next paragraph gets better in that it's really just more of an all capital bolded sentence that says:

THIS RESEARCH STUDY WILL BE THE FIRST TIME THE STUDY DRUG WILL BE GIVEN TO HUMANS.

Donna actually said that Rich will be the second person ever to receive this drug. So there is one other person on the planet who has ingested the pills Rich will take next week. I think the only thing more extreme would have been if the nurse said, "The first patient, God rest his soul, didn't react very well, but we have high hopes for you!"

We're flying to Nashville on Monday morning for an afternoon appointment to go over all the details. Tuesday, Rich will get a CT scan, eye exam and EKG for a pre-trial base line. We hope we can start the trial on Wednesday but they might not have a room available for him, so we might have to wait until Thursday to start the trial.

The drug is in pill form that he takes twice a day, but on Day 1 and Day 15 they want to monitor him from 7am to 7pm to see how he absorbs the drug. I hope they have good wifi. Once his first day is done at the center we can fly home, but that's just the start. For the first six weeks of the trial, Rich has to show up for checkups once a week. So every Wednesday in May, Rich will be flying to Tennessee for the day. On Day 15, he'll have to come in the night before and leave the next morning.

After the first six weeks, Rich will continue receiving the drug and will go for a checkup once every three weeks. Every other visit (so every six weeks) he'll get a CT scan to see how the slime is faring. We have no idea how long he would be on the trial. He can continue until either the side effects are unbearable, the drug seems ineffective, or the doctor says he should try something else.

Rich is worried that he will have the worst of all possible side effects, be miserable and not get any benefit from the drug. But that seems to be his tendency to assume that life is setting aside a shit sandwich at every buffet just for him so that every one else can enjoy the prime rib.

We are happy to see progress. But it is a little alarming to find out Rich's Wednesdays are spoken for for the next year or so. Needless to say, we'll have a lot of Southwest points by Christmas.

For those inspired for some light reading, you can read about the BVD-523 drug trial. Riveting stuff.

This is our best option to shrink the slime. Let's hope these magical pills focus on the slime and leave the rest of Rich alone.