Seth's Info

It's been a while since I've posted -- the good news is that I've been keeping busy and don't have much to report. I had C/T scans done down in Altoona last week and will get the results tomorrow in NY. I'm driving down to Philly today and will take the train in tomorrow. I'm getting an MRI of my spine done as well, and will return Wednesday. If all goes well I'll start taking my twice daily dose of Sorafenib. I am anxious both about the C/T results and starting a new drug.

Unfortunately, I'll miss out on trick or treat here in the neighborhood. The kids are excited and will collect way to much candy, I'm sure. I'll try to post some pictures of the kids when I return.

That's it for now, hope everyone is well. Happy Halloween!

Seth

I travelled down to Philly Wednesday for follow up appointments at Fox Chase. The surgeon is very happy with my progress and didn't see any complications with my case. I also met with my oncologist there, but since I am starting treatment at Sloan, I won't be seeing her regularly at this point. I'll be home all next week and then travel to Sloan the following week to begin the clinical trial. Overall I am feeling well and gaining strength. I am trying to stay active and keep busy.

Jenny's job is going well and I was able to visit her office this week. Their research lab has recently acquired some sophisticated body fat measuring equipment, called the Bod Pod. It looks like a giant egg, and uses air displacement sensors to accurately determine body composition. My body fat was 17%, which is reasonable. I am still trying to gain muscle mass and will get measured again to see how I'm doing.

Jack has finished up Flag Football, here is a picture from a recent practice. Jenny and Jack are planning on going to the PSU game tomorrow, I'm still not up for it. Spencer will continue with soccer through the end of the month.

That's it for now, take care.
Seth

After 3 nights in NYC I’ve made it back to State College courtesy of a ride from my Dad. He is spending the weekend here much to the delight of my kids. I had a good visit with the medical oncologist, Dr D’Adamo, and his staff about enrolling in the Sorafenib trial. I signed the paperwork and should be able to start in early November. I need to get C/T scans completed, and some other tests before officially starting the trial. The doctor was very positive about the drug and felt like it was a good move at this point. Some of his MPNST patients have had good luck with it, although not all. Unfortunately, with sarcoma there are no guarantees. The biggest side effect from this drug is blistering of the feet and hands. The severity varies quite a bit among patients, so I can only hope for minimal effects. Participation will require trips to NYC every 2 weeks for 12 weeks, then once a month.

While in NYC, Mom and I visited the Natural History Museum, which I had not visited since I was a small. We had a nice time and I enjoyed the diversion. We also were not far from the aircraft mishap, and it was a little scary to hear all the sirens etc.

Spencer turned 6 this week, and today we went to Fun Unleashed, a new “Chuck E Cheese-like” establishment in town and had a great time. I am still taking pain medication because my back and abdomen tend to ache when I’m active, but in general I’m feeling well. I am eating well but still not enough to justify stopping overnight tube feeding.

I’ve had some trouble posting photos on the blog lately, but finally found a fix. Here is a picture of my coworkers from SRI the day they worked on my landscaping (it still looks great), and an old family photo sent to me from a cousin in Georgia (Thanks, Rob) that I am fond of -- I’m the one on the right.

Enjoy your weekend and take care,
Seth

Well, despite my best of intentions on relaxing at home this week, I’m currently in New York for a series of doctor visits at MSKCC. I met today with my radiation oncologist, Dr Yamada, and discussed my recent surgery and esophagus damage. He was surprised by the turn of events and said this was the most serious side effect he has ever had with IMRT (lucky me). He is going to review my reports and imaging studies to see what he can learn. I am also meeting tomorrow with Dr Boland, my spinal surgeon, for a follow up.

Lastly, I am meeting Friday with Dr D’Adamo, a medical oncologist who I consulted with in April. He is helping run a clinical trial with a drug called Sorafenib. Sorafenib is a targeted drug, a pill that you take daily, and appears to be generally less toxic that traditional chemotherapy regimens -- its side effects are low to moderate in most patients. With any luck I will qualify for this trial and be able to start treatment within the next month or so. They will probably want me to have recovered completely from my surgery before starting. I’ll need to get a new set of C/T scans and probably come back to NYC every 2-4 weeks (at least initially). I’m currently staying at my Dad’s apartment on First Ave and will be able to stay here through mid-November. After that I have some other options for commuting and staying in New York.

I am excited about trying out a new targeted drug, and hopeful that it will have a major effect on my tumors. I am trying hard to eat plenty and stay active in an attempt to add some muscle to my too-skinny body. The tube feeding continues without much trouble, and I am still catching up on sleep.

We should be home on Friday afternoon, in time for the weekend at home. I should know more about the trial by then, and will post the latest.

Take care,
Seth

I am thrilled to report that Jenny and I returned home yesterday and our family is back together again. I was going stir crazy by Wednesday and managed to convince the doctors to send me home Thursday. I am doing well and getting around the house without too much difficulty. My abdominal incision still keeps me from doing too much.

We had a home health care agency set up tube feeding equipment here at the house, so I can do tube feedings overnight. It’s basically a plastic bad to hold the liquid food, a small pump, and a tube that fits into my J-Tube in my abdomen. I’m currently getting about 1200 calories a day from the tube feeding, and starting to eat more each day via mouth to complete my nutrition. It is a little hard to describe the sensation of my new stomach arrangement, but I am getting used to it. I am slowly expanding the type of food I am eating as well. Jenny and I went to Wegmans today to pick out food that looked good (I even rode the motorized cart around without wounding my pride too much). Hopefully within a few weeks I will be off the Tube feeding altogether, but I am not going to rush things.

Jenny and I were thrilled to see the kids again, and they seem to be accepting our presence after an unplanned multi-week absence. Many thanks to mom, Mark, Ann, Jaime, and Jane for watching the kids while we were gone, it was a huge help. Also a big thanks to the many co-workers from SRI who came out this week to clean up our yard and mulch the landscaping. Everything looks great (and professional) and Jenny and I are so grateful for your efforts. I only wish I could have been around to help out. Another big thanks to all those who sent cards, books, and magazines to me in the hospital. It was always exciting to get mail in the room.

It looks like I am going to head to Memorial Sloan Kettering next week for some follow up appointments and also to meet with an oncologist there about a clinical trial. We may switch directions on the treatment plan, but haven't figured it all out yet. More on this later.

That’s it for now. I hope to report continued progress in the days to come.

Take care,
Seth

A quick update on our status here at Fox Chase. I am getting close to getting discharged, with any luck it will be on Thursday. I am off IV's and just getting tube feedings thru my J-Tube. Unfortunately, my body isn't quite ready for the tube feed and most of it is running right through me. This is very normal, but the doctors want to wait and make sure things clear up a little bit. I am starting to eat small quantities of food and water. This is working pretty well but I can't eat too much at a time. The whole thing is a bit of a pain, but I am told that it gets better. Once I get home we'll have a pump to do the tube feeds overnight, with me eating regular food during the day. We'll see how this works out.

Jenny has continued to stick by my side each day, which I love her for. I am getting a little stir crazy in here and cannot wait to get home. We did get outside today in the 80 degree weather, which was great.

After 3 days without a roommate, I am getting one in my room. To be honest I could use the company and distraction. I hit if off with my first roommate, we really had some good conversations and will try to stay in touch.

That's it for now, hopefully we'll be home on Thursday afternoon.

Seth

This is Seth writing again. Thanks to Jenny for filling in while I was down and out. I am continuing to progress and recover from my surgery. I am filling my days by walking, reading, sleeping and watching some football. The doctors are still waiting for my newly stretched stomach tube to settle down before I start to eat or drink anything. We’ll probably try tomorrow. The new path is a little more convoluted than the oringinal esophagus so my body will have to learn to use the new one slowly. I am getting fed via a “J-Tube” which goes right into the top of my intestines (the jejunum, in medical terms) from a tube in my abdomen wall. This will continue for some time until I can get my complete nutrition via mouth. The doctors are also waiting to make sure I can digest food via the J-Tube without complications before letting me go home. My best guess is that I’ll be able to head home by mid-week. I am still dealing with some pain in my abdomen from the surgery, but it is manageable. It keeps me from walking as much as I would like though. Jenny is still here everyday, staying at a nearby hospital apartment, and I’ve had a handful of visitors, all appreciated. I’ve received lots of cards and books, my thanks to everyone. The nursing staff here continues to impress me; they really go out of their way to make things comfortable and friendly. Also, a big thanks to Mark, Jaime, and Ann for watching the kids over the last 2 weeks, what a huge help.

Big picture, I’m hoping to return to State College this week and rest for 2-3 weeks before my next round of chemotherapy. Once I get some weight back on and am feeling stronger I’ll need to resume treatments to avoid losing the ground we’ve gained over the summer.

Jenny and I sincerely thank all of you for your support and prayers during this difficult time. Knowing that we are not in this alone makes a huge difference for us. We’ll update the blog with any significant developments and once we have an idea of when we’ll be returning back home.

Thanks again and take care,

Seth