Lonsurf

Lonsurf.

Although it sounds like that new TNT original programming wherein Don Johnson plays a grizzled bartender who lives at the beach, occasionally solves crimes, and is seen at least once an episode dragging an ancient surfboard out of the waves,* it's actually the name of my new cancer drug. It's a combination of trifluridine and tipiracil and is manufactured by Taiho Pharmaceuticals. 

The good news: the pill are a lot smaller than the Xeloda was. Those things were horse pills, but these I keep fearing I'm going to lose. They are tiny.

The bad news: these things are freakin' expensive. Retail cost on a three week cycle of Xeloda was roughly $3K. I haven't seen the EOB yet, but I'm told the monthly cycle of Lonsurf is $13K. (Let's hear it for good health insurance.) 

More good news: you take the pills on this weird five days on, two days off, five days on, sixteen days off cycle. As far as I'm concerned, the fewer days I'm taking pills the better.

More bad news: you take the pills on this weird five days on, two days off, five days on, sixteen days off cycle. You should see the kit the manufacturer gives you to manage all that. It's this weird blue briefcase that's about 9x12x3 (i.e., bigger than many laptops) and inside it is a manual (literally, I think my car manual is smaller) providing everything anyone could ever want to know about the drug, although in my case, I don't actually want to know anything about the drug (as noted previously, I'm a terrible cancer patient) so it's completely superfluous; a thermometer, because everyone's really worried about infections and fever; and these two enormous, week-long drug trays, each including four slots that don't actually open (since you're supposed to take two days off), and ten slots that you're supposed to fill with your morning and evening doses (more on that later). The pharmacist handed me all the stuff, and I just laughed. There is absolutely no way I'm carrying all that crap around. 

Still more good news: as noted previously, I don't have to use a mail order pharmacy to get this stuff. I can just pick it up at the SCCA. 

Still more bad news: holy crap, but the SCCA loves their pointless packaging. My little tiny pills come twenty pills to a bottle in this smallish white bottle. Since I need eighty pills, I get four bottles. Each of those four bottles, then, goes into a larger, standard, clear amber prescription bottle. Those four bottles go into a zip log baggie, with a nice chemotherapy warning on it, and then that bag goes into a paper bag so no one can tell what you're holding. The crazy part is the pharmacist tells me that they want me to keep the pills in all this packaging, pulling them out only as I need them to take them. First, so why on earth are you giving me a briefcase with two pill trays when using said pill trays would require me to open everything up to fill them? And second, are you insane? I'm not carrying all that crap around with me. I'm going to open it all up, concatenate the pills into just one of the small bottles, carry that bottle, and throw all the rest of it away. 

And now the really bad news (I've run out of the good): so this is a new drug, which means the doctors don't really know what it does. I asked the pharmacist how long I could expect to be on it, but he just kind of looked at me wide-eyed, said they didn't know, but mentioned that the SCCA has had people on the drug for three or four months. When I say new, I mean completely new. Moreover, this means the side effects are also unknown, and I noticed a fair bit of crazed planning around this fact from the health care providers. With the Xeloda, they just prescribed it and sent me on my way. With this stuff, I've got a follow-up call next week, a follow-up visit the week after that, and then they want to see me the week before my next trip (more on that later) to make sure they don't have to do a blood transfusion.

Wait. Back up. Blood transfusion?

Yup. It seems this stuff basically screws with your white blood cells, red blood cells, platelets -- basically, everything in your blood -- so it's very possible I'll need a transfusion. Fair enough. As long as it doesn't screw with my travel plans, they can transfuse me if they want. I guess...

Which leads to the really, really, really bad news: I think it's fair to say that my hopes for a tattoo have now officially died. The PA made it pretty clear that Lonsurf is not only going to screw with my blood, it's also going to cause uncontrolled bleeding. Nose bleeds, random bruises -- if inappropriate bleeding is involved, Lonsurf will cause it. Which means getting jabbed in the arm with a needle a few thousand times while on this drug is not going to be the wisest of choices. And since going off the drug will very likely be followed in very short order by dying, I think it highly unlikely that I'll manage to get inked.

Ah well. Such is life. 

Someday I'll post the design I was going to get here, in case anyone else wants to use it. But I'll wait until I'm sure I'm going to stay on the drug, so I won't ever be able to get the tattoo. I'd hate for someone to steal my idea before I was done with it. 


* To the best of my knowledge, not a real show -- at least not yet.