I started maintenance two Wednesday’s ago. So far it’s going ok. I’m still adjusting to the effects of the drugs and trying to work out the best schedule, but overall it’s going fairly smoothly.
I also started working again at the beginning of October (part time on a rehabilitative status, so technically I’m still in disability) so that has made life much busier keeping on top of all the schedules. It’s good to be back though. Overall I feel like we are finally getting back to “normal” though, which feels great. It’s been a completely insane year. Last year at this time (I specifically remember it was right around Halloween) I was dealing with acute bone pain and suspected I fractured another rib…which had me absolutely terrified. It turned out there was no fracture (which was even scarier!) and that set off the process of me finding a new doctor to figure out what the heck was going on.
Here I am a year later waiting for an injection of a proteasome inhibitor (a type of compound I had used experimentally in the lab during my grad school days) and trying to figure out the best way to deal with my rapidly regrowing hair, which, btw, seems to be a lot more gray now…having cancer must be kind of like being president, it ages you faster from all the stress! ;p
I am really looking forward to the holidays this year. Myeloma completely ruined them for me last year. The doctor actually said he considered waiting a few days to give me the biopsy result, but in the end decided it was better to call me 3 days before Christmas. Needless to say I was a complete zombie. This year will be different! :)
As for the details of maintenance, the regimen is:
20 mg dex, once a week (orally) 2 mg
Velcade, once a week (sub cutaneously)
15 mg Revlimid, once a day for 21 days then 7 days off
The dex I take the same day as the Velcade injection, and the Revlimid I take every night before bed. The dex I think is the worst in terms of side effects so far. I get all amped up on the day I take it, which is also the day I sit around in the waiting room for hours at the cancer center waiting for the Velcade, so that isn’t exactly a winning combination! Luckily the dex hasn’t been interfering to much with my sleep so far. Many people say they can’t sleep at night on dex day, but I seem to still get tired at the same time…must be those kids running me ragged in the evening! I wake up feeling pretty crappy the next day though…headache, grumpy, flushed, short of breath. The first week it continued all day into Friday, last week I started feeling better Thursday afternoon. The Revlimid has just been causing some mild GI issues. They told me it could swing from constipation to diarrhea, and that’s pretty much how it has been so I’m still kind of waiting to see how that will, ahem, regulate itself. The Revlimid is also expected to decrease my blood counts (from hitting the good cells in the process of hitting the bad cells). This week was my first drop in platelets, but my white count is holding strong and my hematocrit is still increasing (still recovering from the second transplant). The Velcade injection has been uneventful. Some people have a local reaction or redness at the injection site, but that hasn’t been a problem for me.
So we are going to just keep on trucking. Halloween is coming up and the kids are VERY excited. Olivia is going to be the Wicked Witch of the West and Oden is going to be a skeleton. They both have an overactive sweet tooth (like their momma) so the chance of candy overdose on Monday is very real!