Search: “dexamethasone”

Dex and indigestion!

Dexamethasone gives me horrible indigestion. During this time, ranitidine, alka seltzer and mylanta are my friends. This is a typical side effect of dex. Does anyone have suggestions for dealing with this?

I don’t expect to have to take steroids for a whole lot longer. I’m investigating stem cell transplant as my next treatment. After I had a SCT, I wouldn’t be on any kind of maintenance. What’s the point of going through all that just to take drugs again? I know that some folks hope to extend their remissions, but for me it’s a QOL issue.

Dex and blood sugar

When I’m taking dexamethasone, my blood sugar climbs. My endocrinologist doesn’t feel it’s necessary to treat it, because it’s only mildly elevated, as long as I watch what I eat. I have to stay away from starches & sugar. Sometimes that’s not so easy! We had cake at work, and boy did that do a number on my blood glucose.

What I do to lower my blood sugar is exercise. I walk a few miles, and my BG will go down as much as 50 mg/dL. If you’re able, get out and take a brisk walk. It will help. Tonight the first walk early in the evening lowered my BG from 230 to 197. The second walk brought it down to 147. It’s late, and I’m too tired to go again. :)

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.

Doxil
Vincristine
Dexamethasone

Dex

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!

Beth–

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.

Leigh