Seth's Info

Jenny and I returned from NYC this afternoon and had a successful trip. Thanks to my Uncle Alan for driving us in and out of the city, and a big thanks to Lara for a cozy place to call home while we were there.

Thursday was a very long day with 3 appts in 3 different locations in the city. We first met with Dr D'Adamo, the medical oncologist. We discussed 4 different options (different drug combinations, some of them experimental) for systemic chemotherapy but didn't make any decisions. All of them have pros and cons, and none of them are effective for all patients with LMS (leiomyosarcoma). Jenny and I will be doing some extensive research on these options, and contacting other folks via an LMS listserve to find out their experiences with these protocols. There are way to many variables involved to make the decision an easy one, and, in reality, I don't think there is a "right" decision. Many patients with LMS will try several different protocols before finding something that works, so we'll have to just wait and see.

We met with my surgeon, and things are in good shape with my spine. The x-ray looked good and I am continuing to gain stamina and strength. Neurologically, the doctors are very pleased with my condition, so the surgery really went well.

Lastly, we met with the radiation oncologist, and learned the details of my radiation treatment. I will be getting a single radiation treatment on the T4 and T5 vertebrae on April 10th. It will be the equivalent of 11 weeks of normal radiation treatment in a single dose -– sarcoma tends to be more sensitive to larger doses vs multiple smaller doses.

Friday we returned to the hospital for my myelogram and IMRT simulation. I had 10 cc'’s of dye injected into my spinal column and then had body molds made for my torso and head. You are immobilized on a table with the body molds and a C/T scan is taken so that they can determine precisely where the X-ray beams will be aimed and focused etc. Sloan has pioneered this precise radiation treatment for cases just like mine where radiation needs to be administered in sensitive areas like the spine. I then had 4 small tattoos put on my chest to provide calibration points for when I return for the actual treatment. The whole day took about 9 hours, but I was laying down for almost all of it. There are some short term side effects from the treatment (skin burns, sore throat) but I should be able to move on the next phase of treatment after a week or two.

All in all, it was a very tiring two days, and we returned back to State College today. We'll be returning to NYC next Sunday, but haven'’t worked out travel plans just yet.

Once Jenny and I get some more details on what chemotherapy treatment we will be pursuing I'’ll share some more details.

Our continued thanks for all the calls, cards, visits, emails and prayers, we sincerely appreciate all the support we are receiving from everyone.

Seth