I start the LA drug (ARQ736- a pan RAF inhibitor) on Wednesday. It's a phase 1. The dosing is up near what they were feeling would be the final levels. Unfortunately dosing is 4 times a day on a strict 6 hour schedule.
Need to be in LA once a week for 1st 4 weeks, then it goes to every other week. After 4 months if I'm tolerating the drug well, it goes to every 4 weeks.
1/26/2012 - REPORT
Well, after a week on the drug, the side effects have been hitting me hard; probably harder than any of the 5 prior drugs. Worst is fatigue (sleeping about 18 hours a day), harsh headaches and muscle and/or nerve issues (kind of like electric shocks) in arms and shoulders. A bunch of lesser things too (Rash, constipation, hand/foot, irritated tongue) . They told me to take a short 2 day washout and then resume. It's been 1 day. Drugs should be about out of my system (very short half life- have to dose every 6 hours). Arms and neck still feel like a pinched nerve. Worried that some sort of permanent damage thing going on. At least I don't feel comatose at the moment but can't sleep due to the arm and neck thing...just can't get a break. They tell me trial does not allow for a dose reduction. First restaging scan is 2/14 (if I make it).
That's it for now.
2nd week -
After the 2 day washout - went back on the drug to start the 2nd week. After another 4 days, was in the ER for a Bells Palsy event this past monday night, Tues morning. ER doc prescribed Prednesone and Valtrex. Discharged from ER at 3am (why do these things always happen in the middle of the night?) Follow up with the trial doc on Tues... he told me to hold off those 2 drugs and the trial drug until I saw him Wed morning per my schedule.
Well - the drug company did not think the Bells Palsy to be related so now after yet another brain MRI ( I hate those things), I am back on all the meds. I have no energy- a casual walk has me huffing and puffing, but not sleeping 18 hours a day as of yet. My feet are hurting from hand/foot fairly bad. I think the constipation is under control with use of some laxitive every other day. Headache has eased. Blood pressure is escalated like when I was on sutent- will need to do something soon to get that better controlled beyond the currrent 10mg lisinopril and 10mg amlodipine. (In the ER it was 190 something over 90 something....at little stress ya think? Currently it's running around 150/88 at home.)
AND ..my face left side doesn't work from this "non-related" Bells Palsey thing. Eye won't close properly so I need an ointment to prevent dry out but it totally blurs the vision. Lips don't form quite properly so speech is a bit off. A smile looks like a sneer.
WHAT A MESS!
Back to the clinic this Wed for an 8 hour round of PK testing and the Wed after for the 1st staging scan, a mere 4 weeks after I started this protocol. Seems like it's been forever. Thank goodness my visits there go to every other week after that. Till now it's been every week. Can't wait for that slow down. Also can't wait for the scan to see if this stuff is working.
Well, that's it for now. I pray I make it back to the clinic without another major incident.