Bob update: Breakdancing?

Bob and I have been to Sloan-Kettering and Temple University Hospital for consultations. We were strongly considering a clinical trial and had made calls to get "vetted" for a trial of a Japanese drug. The clinical trial would require Bob to be off all drugs for 28 days, something that we both feared. There were a few other options, but Sloan Kettering was recommending the trial. The down-side of the trial is that we might be placed in the control group, which means no experimental drug, just a standard treatment Vorinistat -- which has nasty side effects.


Trek to Temple
We had a previously scheduled appointment with an oncologist/radiologist at Temple to learn about Total Skin Electron Beam Radiation (TSEB). In our minds we'd ruled it out as too logistically difficult. The treatment described by our primary oncologist was grueling -- ten weeks of 5-day-a-week treatment, staying overnight in Philly three days a week. And if that wasn't disrupting enough -- someone (me?) would have to stay with him. I would have to take a leave from work, which I didn't think was a good idea.

TSEB here we come
The Temple visit gave us a whole new perspective on TSEB. The oncologist was WONDERFUL, like meeting someone who speaks your language in a foreign country. He recommended a low-dose version of TSEB radiation, only 3 days a week for four weeks. He offered assurances we loved to hear -- everyone responds to this treatment, though the positive effects are not permanent. It "resets the clock" on Bob's disease, starting with healthy skin again, and allows the other drugs to work with less of a disease burden.

Bob was sold -- he changed his treatment plan without even asking me what I thought -- which is okay with me. I was very afraid of going off his drugs for the clinical trial.

How does TSEB work?
You get blasted with radiation from all sides in what is essentially a phone booth. You  stand in a booth and assume various positions (looks like a breakdancing tutorial!). The cancerous T-cells are "exquisitely sensitive" to light and radiation, knocking the disease back and making the skin a more hostile environment for the bad cells. Some people go into remission, others start to get worse as soon as the radiation stops, but most folks fall somewhere in the middle.

Bob's skin is likely to redden and might peel, but probably he won't blister. He is pretty excited about the prospect of going back to work following treatment -- something that wasn't in the picture a few weeks ago. His workplace supervisors, HR, and colleagues have been wonderful. I've said it several times but it bears repeating -- we are so very lucky.