Roswell Park Cancer Center, Buffalo, NY

I'm leaving today. Spouse ended up taking some time off work, so we'll be driving.

I'll be staying at the Kevin Guest House, which is for out-of-towners undergoing treatment at Roswell Park. $25 a night for two adults, and you do have to share a bathroom. But, it looks like a nice B&B, and I'm OK with a shared bathroom set up.

My appointment is for Friday. I'll report back.

Jennifer

WARNING: This post is is long.

I just got back. It was a fabulous trip.

We stayed at Kevin Guest House, which is $25 a night for each adult. It is right across the street, and up a short block from the main entrance to Roswell. Off-street parking is free. The rooms are huge. Each floor has two large bathrooms, and they are kept very clean. I never had to wait for a bathroom, and no one ever knocked on the door while I was in a bathroom. Each bathroom is shower only. At least, that's how it is on the second floor.

Free dinner is at 6:00, and free breakfast seems to be between 6:30 and 9:00. There is always food available in the frig and cupboards. If the food isn't marked with someone's name, you are free to use it. They have a huge Viking gas stove and two refrigerators.

There are no guest rooms on the first floor, so you have to be capable of going up at least one flight of stairs. Free laundry facilities in the basement.

My appointment was for 12:27, Friday. I got there early, which is good, because I had failed to fill out the patient questionnaire. I get registered in about ten minutes, and instead of a medical tape bracelet, you are given a green plastic card with all your data on it. This card is your entrance to everything at Roswell. A nurse scooped me up and took my vitals. Kids, I've lost three inches in height! I used to be 5'5", about two years ago; now I'm 5'2". I had to recalculate my BMI, and that was frustrating, cause I'm obese again. Pouting.

Anyway, after the vitals, you are placed in an examination room, and told to put on a gown so that you can be naked from the waist up, if need be. More history taking with lovely Nurse Nancy.

Then, the doctor enters. Mateusz Opyrchal, MD, PhD. He has a cuddly, somewhat European accent. He gets right in to it. We talk about the fact that six years in to a stage 4 dx, I am heavily treated. He does take it as a sign of good things that I'm not getting diminishing returns from each new treatment, as I seem to get a year from each new treatment. He pokes and prods me, and asks how physically active I am. He comments that from looking at my history, I should be in big trouble, but I am not. I have a surgeon uncle who keeps saying the same thing. I don't know what they are referring to. Uncle says its because I'm still living my life and getting things done.

I tell him a careful version of the truth, which is that I'm good for about 30 - 45 minutes of physical labor at a time, then I need to rest a bit. After the rest, I'm good to go again. Here's where I could have killed my darling spouse: when I mentioned that I'm good for 30 - 45 minutes of chores at a go, he snorts! Openly snorts! I know he's thinking how much I hate to vacuum, but I have bony mets right in the middle of my shoulder blades on the spinal column (incredible shrinking lady, remember?), so vacuuming hurts. And, after the eye surgeries, I'm still not allowed to lift heavy stuff.

Anyway, I hope he hasn't scuppered the trial for me because of injudicious snorting.

I went to Roswell, because they are recruiting for a phase 1-2 trial which is working with training T-cells to be cancer killers. I have to pass two barriers. First, my blood has to express a certain protein, so they took about a quart of blood yesterday. Shout out to my amazing phlebotomist at home, because Roswell lady was very vigorous in her butterfly placement. Frankly, I felt like I was going to be perfed, but I wasn't. It is more likely that I was just tired and a bit wigged out at the end of the day. If my blood plays nicely with others, then we move on to a tissue biopsy. As I've got a lovely, juicy liver met that is easy to get at, this should not be a big deal. I'd get it done at Roswell, as the only one who does them where I live is a general surgeon, and I want a someone who does this sort of thing several times a week.

The actual trial researcher (!!!) came in to talk to me to explain the trial. I pretty much groveled and told her how much I believed in this approach, training our own immune systems to seek out and destroy the bad proteins in cancer cells.

If I qualify (by expressing the right proteins), they'll dialyze me to get what they need from my blood. Then they will beaver away in their lab to train the T-cells to recognize the naughty cells. If that is successful, my own immune system will be squashed for a bit with massive chemo (I think - it used to be radiation back in the old stem cell days). When my immune system is rolling around on the floor, clutching its gonads, the improved T-cells will be dripped in.

Then we wait. And watch.

Bad things that could happen are a cytokine storm, where my body freaks out at the new intruder, and makes me very sick indeed. There are ways to stop this, but it pretty much ends the treatment.

Good things are a remission. That lasts. My longest real remission has never been longer than three months.

Weird stuff that happened during the trip: 1. I went sleepwalking. Each night at the guest house, I woke up "not in my bed". Once, it was a reading chair downstairs. The other time, I was sleeping on the stairs that lead to the house's back exit. 2. Spouse and I were too freaked and tired to take advantage of being alone and child-free for the first time in, well, ever. We talked a lot.

It's nap time now. More later when I'm lucid. I'm so happy I made this trip, and think it's going to be a good thing.

Jennifer

Cure-ious,

The study has four groups. The first three groups will need to express the NY-ESO-1 protein. The fourth group will not need to express the protein, as they will be offered a drug to increase the expression of the protein. I think, most of us express the protein in our cancers, but some more than others.

After this step, it's time to train your T-cells using gene directed therapy. Then suppress your remaining lazy, ignorant T-cells with chemo, drip the educated T-cells in, and . . . wait.

It heartens me to know that this study is designed to last 15 years for each participant.

Signing off now, as I want this so much I have to go vomit.

I'm in the trial. I don't have full details because while cancer doesn't stop for July 4th, everything else seems to.

I know it's not a guarantee. If you read up on Judy Perkins, she has a good remission, but two of her cancer buddies died in the trial. One from a staph infection and the other from cancer. https://www.womenshealthmag.com/health/a21100887/w...

I am scared. For six years now, everything they've plugged into me has worked for about a year. If this doesn't work, I could be screwed. If it does, well, great!

More to come, when I know more.

Just got back from the most contrasty scan I've had in years. Now, I wait to hear when to show up in Buffalo.

All digits crossed.

Can you imagine a future when this is normal? You develop a cancer, the folk in the white coats figure out its achilles heel, target it, and that's it. Your own immune system does mop up. Maybe, they'll even be able to do serological studies or DNA studies to figure out what cancer you'll develop, and you'll get a vaccine for it.

We are living in the future.

Cure,

I don't know in which arm I'll be going. I think the first three are for those who have adequate expression of NY-ESO-1. The fourth arm is for those who will have their NY-ESO-1 amplified by decitabine, then they will have engineered t-cells poured in to them.

I do know that after the t-cells have been administered, it is a watch and wait. Oh, I am going to be so full of Ativan. Gentle standing on the sidelines has never been my thing.

I had the necessary scan today, so I hope to hear from folk tomorrow as to what the next week or two is going to look like. Luckily, my kid is home from college, and can manage the fort here (dogs, cats, etc.), while I can get my fanny on the bus to Buffalo at the drop of a hat. Spouse may have to go out of town for part of that process. He's not loving it, but as primary wage earner, his insurance makes all this possible, so keeping the job is a big priority.

That giant squeaking sound you are hearing is me.

Jamie,

Thank you for the info! I am in the waiting queue for the one at the NIH that you are on. It's great to hear that you are doing well. How was the resection?

Sept. 4, I'm going for a looksee visit for a cancer vaccine trial in Virginia. I have a very boring tumor with only ten actionable mutations, so most immunotherapy trials find me very boring.

Could you start a new threat with your trial information? All lot of us would be very interested in your experience.

Jennifer

Ditto, Jamie! Spill the details, for science, and for us.