M is for Myeloma is a place to chronicle my family's newest 'adventure' living with multiple myeloma to keep family and friends updated and also hopefully help others living with the disease.

Wednesday, October 26, 2011

Maintenance. 2 weeks down...154 weeks to go!

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!

Wednesday, October 12, 2011

Hello again Dex, can't really say I missed you.

Today is the day I start maintenance.  My appointment for Velcade injection is set for 1pm.  So the dex goes down the hatch now, then I'll take the Revlimid before bed.  Hopefully it all goes smoothly...wish me luck!

In other news my friends M & J in Little Rock just welcomed their first grandson on Monday.  I know they are just THRILLED!  Congrats to them and their family!

Sunday, October 2, 2011

Living strong today

And everyday! I'm finally feeling like things are getting back to "normal" now that the intensive part of treatment is over. My hair is growing like crazy and I started back to work this past week. I'm on a rehabilitative status for now (24 hours per week) at least until I get settled in to maintenance therapy. I should be getting started with that next week. I was waiting for my Revlimid proscription to be processed. Since it is teratogenic (causes birth defects) it is very tightly regulated and they needed two negative pregnancy tests 10-14 days apart before it could go through. The specialty pharmacy called me on Friday though and it should be coming early this week. Thankfully my insurance is covering the cost and my copay will only be $25 per month. The actual cost for a months supply is over 7K! Considering I will be on it for the next 3 years, $25 is much easier to handle. ;p