Search: “Revlimid”

I have my next appointment to check up on things on Tuesday at UNC. I’m going back to see Dr. Orlowski. I originally switched to Wake Forest so I could get Revlimid before it was approved by the FDA. There are a variety of reasons why I decided to go back to UNC.

Anyway, I haven’t had any treatment since the chemo in October, and this is the longest I’ve gone without since 2003. It feels wonderful not to be taking drugs, and I’m trying not to think about what the myeloma might be doing. I’m just trying to enjoy the time off, especially from steroids (dexamethasone).

I haven’t been complying with treatment this month. Revlimid makes me feel pretty terrible, and I wanted to be able to help my mom through her surgeries and whatever other tx is needed. I do feel better in most ways, now that I’ve been off Revlimid for a month. I’m afraid to say that I didn’t tell anyone I was doing this. If I need to, I’ll go back on it in September. I don’t think it was doing much for me though. Just making me feel sick. I plan on having my stem cells collected soon, and they want the disease level as low as possible for that. I’m confused about whether the Cytoxan plays a role in that. I have an appointment with the “stem cell lady” next week, so I’ll find out. If I need to, I’ll do high dose dex again for a month or so. It seemed to work pretty well for me during January through April, but it was what I’d call a heinous treatment. I feel tired just thinking about it. Like I said before, I’m almost to a point where QOL on treatment is unpleasant enough to warrant a stem cell transplant.

I started the Rev/dex extended access protocol in January, 2006. When I began, my IgA was about 2300 mg/dL and my m-spike was 1.5 g/dL. By the end of April, my m-spikes (I usually have two) totalled 0.3 g/dL and my IgA was in the 500s. Since then, those values have gone up a small amount.

The Rev/dex EAP called for 25 mg of Revlimid for 21 days, then a week off. For the first 4 months, the dex was high dose. 40 mg/day for 4 days, then 4 days off. I took the last week of the cycle off from dex as well, so I had one drug free week every cycle. The high dose dex was difficult for me, due to the crash I experienced. My doctor suggested tapering the dose, which worked well.

Day 1: 40 mg
Day 2: 40 mg
Day 3: 40 mg
Day 4: 24 mg
Day 5: 12 mg
Day 6: 6 mg
Day 7: 2 mg
Days 8-14 off
Day 15 – 21: same as days 1-7
Days 23-29 off

Starting in May, I began standard dose dex, which is 40 mg a day on days 1-4. Just 4 days a month. My schedule for Revlimid is still the same.

I chose Revlimid because I think taking pills at home is easier than driving someplace for some kind of systemic chemo. It’s not without side effects for me though.

During the first few weeks of treatment in January I suffered from terrible headaches. I think I adjusted to the Revlimid and no longer had headaches after the fisrt 2 weeks. Throughout this treatment, I’ve been plagued with diarrhea. Once the high dose dex was over, I began to experience nausea too. I believe the dex was keeping it under control before.

For the nausea, the doctor prescribed Compazine and Ativan. I think the Ativan works better than Compazine. I also think I feel less queasy if I don’t let myself get hungry. It seems as though I need to eat constantly, but not too much at a time.

Towards the end of May, I began to experience a sore throat and post nasal drip. The PND is thick and has been impossible to get rid of. To be on the safe side, my PCP has prescribed 2 different antibiotics, neither of which had an impact. This makes us certain it’s not a bacterial sinus infection. I’ve learned the most un-ladylike skill of “hacking” up gunk from my throat. I haven’t found anything that just gets rid of the condition though. I’ve tried decongestants and use a saline nasal spray regularly.

The Rev/dex EAP worked well for me. Although my markers have gone up a bit, a trend has not yet been established, so I’ll stay on it until I decide to do something else. I wonder though, how much of its effectiveness was due to the high dose dex since my numbers went up when I switched to standard dose?

Since I stopped the high dose dex and went to standard dose, remaining on 25 mg of Revlimid per day (21 days a month), my IgA has gone up. So has my m-spike. Not so much at first glance, but it is a 20% increase. I emailed my doc to see about having the stem cell harvest done soon. Don’t get this confused with having a transplant too though. I still haven’t made up my mind about that!

I got the results of my blood tests yesterday. My IgA and M-spike are the same as last month. There are two m-spikes: 0.1 and 0.2 g/dL. My IgA is 488 mg/dL. Last month it was 493. My WBC is lower than it’s ever been before, but still in the normal range, so nothing to worry about. I’m a little anemic, but nothing to worry about yet. This could be from the Revlimid. Most likely is. I have a week off starting today.