Fifteen days ago I restarted LDK 378 at 600mg, down from the original 750mg. I dove in headfirst, excited for no more nasty side effects.
I had four days off prior to restarting the drug. And once I did the first four days were great! I was so relieved. No more sneak attacks of debilitating cramps and nausea.
And then one night, while I was having some tummy trouble, I made the connection that it was a “light” version of an LDK episode. That was followed by a symptom-free day and then another “light” day. (I say ‘day’ to keep track, but the most popular time slot is 8-11pm.)
Unfortunately this past week has been as bad as when I was on the 750mg dose. Saturday night’s episode caught me between dinner and dessert. (I owe Seth a brownie sundae.)
I was cramping as bad as ever with nausea that had an eme-bag by my side. Then there was something new. I yelled as if someone had plunged a knife deep underneath the right side of my rib cage. The pain scared me, and for a moment I waited for something to happen. Something as a result of torn flesh and severed arteries, maybe. But nothing happened, and soon my attention turned back to the pain at hand.
This Thursday I return to Fox Chase to begin Cycle 4. I will report that I’m having the same issues. They probably won’t be willing to reduce the dose before the next CT scan. And I’m pretty sure that will be at the conclusion of Cycle 4.
The ‘episodes’ still happen approximately 5 out of 7 days. Most often they are three hours in duration, although some pass faster. Afterwards I’m just spent. I hate dealing with this crap, but I can’t say I have a poor quality of life right now. I spend much of each day in bed, conserving energy so I can be a normal, social person when Seth gets home. And while I’m sometimes feverish, this in-bed time is still much better than during the reign of Gemzar. I don’t feel nearly as bad as I did then.
All of this is just to complain and provide a status update. It seems trivial when I think of my close friend who has a very sick bunny right now. If you have a moment to spare, please keep bunny Jax and his mom Tena in your thoughts and prayers. He has a great doctor, but rabbits can be quite a medical mystery. I hope he regains his strength and is able to return home soon.