Search: “dexamethasone”

Lab results

I’ve been worried about some abnormal lab results. Usually I don’t have any abnormals except for the MM. This time I have elevated calcium, phosphorus, LDH, WBC and abs neuts. The WBC and neuts are from the dexamethasone. I didn’t know about the LDH, so I asked my dcotor, and his response was:

“As for the LDH, this is a very non-specific test, and can be elevated for any of a number of reasons, with myeloma being only one of them. Since your protein level was too low to quantify on the SPEP, however, I would not be worried about that.”

The calcium, he said would be dealt with by the Zometa infusiuon. I never had high calcium before, and it has only started being that way since I began taking a daily calcium +D supplement. I have stopped that as of yesterday!

I will be seeing an endocrinologist on June 2nd. He can help me with calcium levels, the glucose intolerance I have on dex days and the hormone levels that must be messed up from dex! I know there must be some, because I have amenorrhea. Aside from the obvious, amenorrhea is nice because my RBC and HGB are waaaaay up! Check my labs and you’ll see. In Jan last year, my HGB was 13.0 and RBC was 3.96. A few days ago, they were 15.6 and 4.84. A little lower in May, but Aunt Flo was here last week for the first time since last summer.

It’s a dex night and I am up at 2:00 am. I have to take a sleep aid and get to bed!!

AFLAC claims

The claims people at AFLAC are being real jerks. I have the AFLAC Cancer policy, and for a year now, I have been struggling with them to pay my claims for dexamethasone as chemo. Their policy states that dex, when taken orally at 40mg, qualifies as chemo. However, they have been denying the claim all this time. They pay it as anti-nausea meds. I have spoken to them and written to them. My hem/onc has written to them. They have told me to change the way I submit the claims, and that would resolve the problem. Nothing has worked. I’m still getting the runaround! If you have the AFLAC Cancer policy, and you have successfully filed a claim for dexamethasone as chemo, please let me know. This is beginning to smell like fraud to me!

Dex is a pain

Dex is nothing short of agonizing sometimes. High blood sugar, sleeplessness and then the crash.

In a week and a half, I’ll have a blood test called IFE to see if it’s helping me. Dr. Orlowski thought maybe I could try DVd if this doesn’t help. DVd consists of Doxil, Vincristine and dex. It’s different from VAD, because, “DOXIL is made of fat bubbles called liposomes that contain doxorubicin. In DOXIL, these liposomes are surrounded by a layer of hairlike strands made from polyethylene glycol.” It has only a few hour (maybe a little more) infusion rate, as opposed to 4 days.



I had dex at the start of the month (March 1-4). This time I had PVCs, which was a new thing for me (as far as dexamethasone is concerned). I’ve had PVCs before, but not so much with dex, and not to this extent. PVCs are premature ventricular contractions. PVCs interrupt the normal heart rhythm and cause an irregular beat. This is often felt as a “missed beat” or a “flip-flop” in the chest. I know what they are, because I’ve had a Holter Monitor in place for 24 hours before to try to diagnose the problem when it first arose some years ago. It’s an uncomfortable and annoying feeling, but the cardiologist called it benign at the time.

I talked to a research nurse at Wake Forest University about the Phase III REVIMID Clinical Trials they’re running. There’s a lot of dex involved, and that scares me. I can handle 4 days a month, but I’m not sure about 12. I’m trying to decide what to do. The reason I am even thinking about it is because of the neuropathy I’m feeling as a result of my months on Thalomid. The nurse did say that the dex doses can be cut down if there are too many side effects.

The other uncertainty about the trial is that there’s a placebo arm. This means that I could get just dex and no Revimid. If my MM were to advance while on this trial, and it turned out I was taking the placebo, I would be given the real drug.

Treatment possibility

I’ve been taking Thalomid for 10 months now, and have experienced some peripheral neuropathy. It’s to a point where I know I don’t want it to get any worse, so I’ve made a decision to stop it. I stayed on a low dose of just 50 mg/day for the entire time, hoping that I wouldn’t have this side effect (nerve damage). I’m seriously thinking about enrolling in a Revimid trial at Duke. The trial is CC-5013 Plus Dexamethasone Versus Dexamethasone Alone in Previously Treated Subjects with Multiple Myeloma. The way it appears, I could wind up only being treated with steroids and a placebo, but I’m willing to give that a try too. I just know I don’t want to have any more nerve damage done. I called the number at Duke and left a message to try to get more info.

I still have no word about my dog. I hope I’ll hear something soon!

Beth, I’d love to swap some info!


My name is Leigh and I live in Cary, NC. My mom was diagnosed with MM in September. Stage III, but the doctors won’t say A or B. We initially went to Duke, also; I wanted my mom to see the “the very best.” I bet I know which oncologist you worked with; our experiences were uncannily similar!

She did two courses of VDD, both of which made her so sick she was hospitalized over a week each time. She discontinued it and started Thalidomide and Dexamethasone (with Zometa, too, of course,) in early December.

I was planning on going to the IMF meeting in Fort Lauderdale this weekend, too, but my mom was too sick to leave. I’m the only one around to care for her. I hope it’s a useful weekend for you.

Anyway, I’d love to swap experiences and info with you.



Doc says IgA was 781, so it has resumed its downward course somewhat. Lots better than where it started, at 4625 at the end of January!

I’m hoping it’s the dexamethasone that’s largely responsible, because I’m afraid I might have to stop the thalidomide before it causes too much damage. I think I have the start of PN in my hands & feet.


AFLAC is currently denying my claim for using dexamethasone as chemo. They said that one must use at least 40 mg of dex to qualify. When I provided supporting documentation to show that I’m taking 40 mg of dex each week (and the initial 40 mg for 4 days on with 4 days off for 4 cycles at the beginning), they rejected that. They said that the dex was dispensed in 4 mg tablets, so it doesn’t count. It has to be dispensed in 40 mg tablets or has to be infused. Um. Well, there is no such thing as a 40 mg tablet. I wonder if I could have the pharmacy make one for me? Or, can I just have my Dr. write an order for me to have the dex IV? I don’t think Blue Cross, my primary carrier, would like that. That would drive the cost way up. Anyway, I plan to appeal. Apparently, they don’t have much experience with with this drug as an oral chemo. I’m not sure what cancers it’s used in. Maybe not many others. Dex is a very hard drug to take, and I know of quite a few MM patients who can’t tolerate it and have to stop that part of their treatment because of the side effects. They can be quite severe, and include congestive heart failure. I’ll see Dr. Orlowski on Wednesday and show him their letter to see if he can write to them to explain the reason why dex is dispensed in 4 mg tablets.

It’s a really beautiful morning today. The temp is below 70 for once, which is fantastic. It’s been too hot here lately, and too rainy! I enjoy North Carolina weather most in the fall and early winter. Then it’s nice again in late winter and early spring. The humidity has been pretty severe lately, since we’ve been having all this rain. Our county has experienced some serious flooding. I live at the high point of my neighborhood, so I’ve escaped most of it. However, a lot of the gravel from my driveway can be seen at various intervals down the street from me.

The 2004 Toyota Sienna I bought a few months ago came without cruise control, which is a necessity for me. Without it, making long trips is impossible. One thing cruise control is good for is the prevetion of speeding violations. It also makes it possible for me to flex my right leg a lot more. I do need to stop more frequently than I used to, to keep from experiencing that nerve pain that results from sitting for too long. A few hours is the most I can really sit (if that) without having lower back and leg pain, that takes days to recover from. Gosh, when I was in my 20s, it was nothing for me to drive hours and hours. I remember one time I drove from Denver, CO to Kingman, AZ in 18 hrs, only stopping to buy gas when I needed it. I routinely drove for enjoyment. My favorite thing to do after work late at night was to drive from my home in Sunnyvale, CA (near San Jose) to San Francisco and back, just to kind of unwind. Nothing ever seemed too far for me then. Anyway, back to the cruise control! I learned last week that there is no aftermarket cruise control for the 2004 Siennas. The dealer has told me that the only way to have it, is to get it in a new vehicle. So it looks like I am going to be trading my van in some time soon. They’re going to give me top $ on the trade, since I was told at the time of purchase that I could have cruise installed, and even paid in advance for it.

I had my 42nd birthday over the weekend. My sister and her family came down from VA for a surprise party. It would have been a surpise to me, except that someone let the secret out. It was a fun weekend though. I had cake, and that was a nice departure from my typically sugar free life. I had some thoughts about the possibility that I don’t have many birthdays left. I’m going to confess that I’ve never really found much joy in life. I put on a good show though, and not many people know that I’ve suffered terrible depression throughout my life, even having been hospitalized as a child. For many years, life has been a struggle for me. Sometimes I am relieved that I just may not have to suffer through another 30 or 40 years of life. Maybe what I’ve read about depression contributing to disease is true after all. I intend to talk to my doctor about this tomorrow. I’ve been on medication off and on for years, and sometimes it helped. Sometimes it made things worse. I guess it’s a matter of finding the right one.