A Post for Lucy, aka, the Side Effects of Lonsurf

Bearing in mind that I can attest only to my own anecdotal experience with Lonsurf and, moreover, that that experience is based on just a single month (i.e., five days taking pills, two days not, five days taking them again, and then sixteen (four so far) off) on the drug, here's what I've found to be true about Lonsurf.

Your mileage may vary.

On the good side, the pills are small and so they're really easy to take. I've even dry swallowed them a few times, though it's not recommended. After a few months on the Xeloda I reached the point where I could barely choke them down, but the biggest worry with Lonsurf is that you'll drop one and lose it.

So much for the good side. Now let's run down the bad. In no particular order...

While it's not as bad as what you get with the infusions, fatigue is again an issue. I'm back to being tired, and being tired of being tired. Since it's only been a few days since the first round ended, I can't say for sure that the fatigue won't recede during the next fourteen days. If it does, yay! If it doesn't, boo! But in some ways it doesn't really matter a whole hell of a lot since my next two trips will both coincide with the days I'm taking the drugs. I start taking the pills on the day we leave for the cruise, and the start them again a week into the Great Britain trip with the older boys. As they say, timing is everything.

I haven't noticed any affect on my fingers, but the neuropathy in my feet seems to be worsening. My toes are number, the weird tingly sensation goes back further, and occasionally the whole mess hurts. More problematically, I'm noticing an increase in my instability. These days, I stay pretty close the hand rail when going up or down stairs.

I can't say with 100% certainty that it's a result of the Lonsurf, but I have this very strange craving for iced tea now. I'm drinking the stuff by the gallon, and it's not usually my preferred beverage. (And for the diabetes-knowledgeable in the audience, it's not high blood sugar. I checked.) Go figure. 

Next up we have, well, how shall I put this? Let us say, a new level of intensity to the gastrointestinal distress that has been my constant companion since the original cancer diagnosis. Unfortunately, while to this point the problem has basically been that my digestive system was disgusting, now it's less disgusting but a lot more painful. Since starting on the Lonsurf I've been in at least some level of pain pretty much constantly, and when my guts start churning it feels like I'm being stabbed. Not my favorite feature of the drug, to say the least.

Last, but not least, we have -- rather, a few people have suggested I might, perhaps, possibly, though it's not a definitive thing but more like just something potentially worth considering, i.e., the idea that maybe the Lonsurf might be causing a mental defect which I cannot actually identify by name because if I identify it as something I potentially have and then the wrong party noticed my blog, it could prevent me from acquiring the drugs I'll eventually be wanting pursuant to RCW 70.245. So just to be clear, the only condition I have that's relevant under RCW 70.245 is terminal stage IV cancer. 

But I can't promise that someone taking Lonsurf might not find themselves feeling a little, uh, blue. Of course, the potential causal linkages in this particular scenario are a little too numerous to make it possible to reasonably assign blame.

Regardless, best of luck to anyone else starting up on Lonsurf, which certainly seems to be making its way into the pharmaceutical company nirvana known as "standard of care."