Friday, May 16, 2008

On a new course

I started my new treatment this week. So far so good. My doctor and I were talking about what side effects I might expect, most typically rash, itch, and diarrhea.

“But most patients don’t see those until after the third cycle, if at all,” she said.

“Third cycle?” I asked, visibly distressed, recalling the schedule the nurses handed me last week when I was in the office for blood work.

“I meant the third treatment. You’ll have one now, then again in three weeks, then a third three weeks after that.”

“But the schedule they gave me last week has appointments through October. I thought a cycle was twelve weeks, and their schedule includes two full twelve-week cycles.”

“Yes, but the second twelve weeks is observation only. You get scanned after the first twelve weeks. We watch, and let the meds settle in to work for another twelve weeks. Then you get scanned again. This treatment is long-acting. We’re not likely to see any change until after that second scan.”

I was still stuck on the schedule they’d written out for me, so I pulled it out of my bag.

“See, it shows appointments all along through the second twelve weeks.”

“Well that’s a mistake,” she said, to my relief, and went on to explain more of the protocol.

After the initial treatment phase, patients go on maintenance, with infusions every three months. Because this is still a research study, there’s no definitive word about how long this should go on, but eventually, the treatment will reduce even further, or even be discontinued.

She warned that the first twelve-week scan frequently shows no improvement, and may even show a reversal. Patients however, tend to report feeling a lot better at that time, so the researchers have learned not to scan too soon, and not to take these initial results too seriously. The second twelve-week scan is when improvement is most likely to show.

After our discussion and hugs I went to the treatment floor, where the nurse administered my intravenous dose of Ipilimumab, and measured my “vital signs” (temperature, blood pressure, pulse) before during, and after the infusion. The process was painless, and I’ve been feeling fine since.

Oh, and I got a lesson in how to pronounce the drug’s name. It’s not so tricky after all: Ip-li-mu’-mab. Just trips off the tongue!


SusieQ said...

"Oh, and I got a lesson in how to pronounce the drug’s name. It’s not so tricky after all: Ip-li-mu’-mab. Just trips off the tongue!

How do you pronounce that first syllable? :-)

I'm just curious - why do they start with chemo and then go to immunotherapy? Why not the other way around?

Ceil said...

First syllable is I-p (not L-p), pronounced as in lip.

That's a good question. I'll bring it up with my doctor next time I see her. I can only speculate based on things she said that she thought I was a perfect fit for the chemo trial she put me in.

And that seemed a good decision until I developed my allergy to Genasense. Who knows: if that hadn't happened, I might still be on that path.

Dan Freeman said...

Lets pronounce it "this crap works!", shall we? ;-)

Hugs at ya!

Ceil said...


Thanks Dan. Hugs are always welcome!