Search: “Revlimid”

Non-compliant

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.

The Rev/dex EAP

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?

IgA up

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!

6th Cycle of Rev/dex

Today I started my 6th cycle of Revlimid and dexamethasone. I’m on standard dose dex now, which is 40 mg a day on days 1-4. I take the Revlimid for 21 days. The last 2 months, my blood tests have shown my MM to be stable and at a quite low level. In May, IgA = 488 mg/dL, with two M-spikes: 0.1 and 0.2. In April, it was just a few mg/dL higher (493) and the M-spikes were the same.

I want to make one thing clear for people who are searching for the Beth Morgan who is a porn star. I’m not that Beth Morgan. I’m the one who has myeloma. Frankly, I’d rather have myeloma than be a porn star. So, if you landed here because you were searching for that Beth Morgan, move along — or better yet, learn something about myeloma and make a contribution to the International Myeloma Foundation.

IgA and M-Spike

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.

Relay for Life Survivor Reception

We had a successful reception Sunday at the National Golf Club. I was glad to meet A.W., another MM patient. You’d think this would be rare, since there are only about 50,000 of us in the United States. She has been in treatment since 1998, when she had her first stem cell transplant in Arkansas. Even a second SCT didn’t give her much treatment free time. She has had about every tx you can think of, except Revlimid.

Anyway, the reception was great. The food was yummy and the company was the best. We had donations to give away as door prizes, and every single person received a prize.

Thanks to everyone who came to help.

One more month to go

I have one more month to go of the high dose dex, which I’m now taking on a schedule of 7 days on and 7 days off. After the end of April, I’ll take what’s known as standard dose, which is 4 (40 mg each day) days at the start of the month or ten 4 mg tab once a week. For the past three years, I’ve taken it once a week, along with some other drug, or on its own, until it stopped being effective and I had to take more. I’ve never taken so much as I’ve had in the last three months though, and it’s wearing me out. I know I only have one more month to go, so I just have to hang in there. Dex causes me a lot of problems, as it does most people. I have stomach problems, thin skin, blurred vision, high blood sugar (on dex days), muscle weakness, PVCs, fatigue and about all the cushing’s symptoms you can get. I think the hardest thing about it is being so weak and shaky. If you’ve ever taken dexamethasone, you know what I’m talking about. You can’t even write because your hands shake so much.

When I see the doc on April 5th, I hope to find out if my insurance company has approved the harvest of my stem cells. If that’s the case, then I’d see when I can proceed with that. Since I’m in a trial, I’d have to drop out before I could have the Cytoxan (conditioning chemo), so I’d probably wait until Revlimid is approved by the FDA for the treatment of MM to do it. That way, I can stay on it for free as long as possible and then have it prescribed to me after the harvest if I need it. I’m so tired of feeling crummy that SCT almost looks good at this point.

Big Report

I have a lot to report tonight. First, my IgA has gone down more from the Revlimid/dex trial. Today’s result was 584 mg/dL. It’s never been that low since my diagnosis. You can see all the results I have back so far by clicking on “My Labs” above.

Once my MM is at an acceptable low level, we will harvest my stem cells. The way it works there at Wake Forest, is like this: They are going to contact my insurance company to make sure they will pay for a harvest and store. Once I have that approval, they will have me in the hospital for 2 days while they administer a fairly powerful dose of Cytoxan. Then they will start me on Neupogen for 10 days, which I will inject at home. I’ll have blood tests here at home to make sure my counts reflect the administration of the Neupogen. It’s supposed to mobilize the stem cells by producing so many that they spill out of the bone marrow into the blood stream. It can cause bone pain when it starts to crowd the marrow. It can be managed with pain meds, which I already have. I’ll return to WFUBMC and have my stem cells harvested through a process called pheresis, where the blood will be drawn out through an IV in one arm, the stem cells removed and the blood returned through an IV in the other arm.

I had an xray to look for lytic lesions. The doc said that AVN is painful when active and at rest, so he didn’t believe it was that. No lesion was found. That was good news. It’s probably the sciatic nerve or some inflammation somewhere.

I lost 4 more lbs between my last appointment 2 weeks ago and today. Seems weird, being on so much dex! But I’m glad. I’m not even trying. I think it’s probably the GI problems I have. Also when I’m on the dex, I don’t have much of an appetite. I’m very thirsty though. It’s when I’m off the dex that I have a ravenous appetite. I just don’t let myself have anything that’s bad for me. During dex days, I stay off carbs as much as I can & sugar (always off sugar, for that matter).

I am going to a different dex schedule. Since I’m so miserable on my days off (exhausted!), I am going to do a tapered dose that goes like this:

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