Search: “dexamethasone”

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.

When you have cancer, you have to accept a lot of changes. Sometimes I just sit and wish for my old life back, but it never does any good. I still have the disease to deal with.

One of the drugs I’m on is dexamethasone. It’s been causing some cosmetic changes, like thinning hair and edema. Most people experience the edema in their feet and legs. I have it in my hands and face. It’s also causing weight gain. I still don’t eat junk food, simple carbs or sugary stuff, but I’m putting on some pounds anyway. I’m going to do my best to get rid of the 10 or so pounds I’ve gained and not let them come back. It’s a struggle for a lot of people on dex. My doctor said that cancer doctors are some of the only doctors who don’t mind when their patients gain weight.

When I was first diagnosed, one of the first changes I had to adjust to was the liklihood that I wasn’t going to get as old as I always assumed I would. There’s a possibility that new drugs or a cure could change all that. I hope that’s the case! I asked my doctor the other day about how long I could expect to live. The conservative answer was 6-7 years and the optimistic answer was in the neighborhood of 10-12 years. He said it’s not a particularly cheerful outlook, but it’s better than it would have been before we started using drugs like thalidomide. I know there’s no way to tell for sure, so I have that in the back of my mind all the time. I told him that I know some people only make it months or a few years, while others live 10+ years. He said that he thought I’d probably be one of the ones that gets to 10, 12 or 13 years. My prognostic factors at diagnosis seemed to be good. What he looked at were things like beta 2 microglobulin and c-reactive protein. You can see all that stuff by looking at my labs.

I’m responding well to treatment now, and that’s a relief. With MM, something that’s stressful is that you don’t know how much time any treatment will buy you, if any. Some people resist treatment and are known as refractory. Some people have been treated with thalidomide and enjoyed years of remission from it! We all hope to find the regimen that works for us. I think everyone would agree that quality of life is most important.

Would you live your life any differently if you thought you had just a few more years to go?

I had good news today. Dr. Orlowski called to tell me that my serum IgA is now at 829 mg/dL (ref range 40-390). I started out in January at 4,625 mg/dL. I’ve been on 50 mg Thalomid daily since April 4th, and 40 mg dexamethasone weekly (after the initial 4 cycles of 4 days on and 4 days off). I also have Zometa every 4 weeks.

Today I have to start collecting urine for a period of 24 hours to be tested or proteins. This is oe of the things I dislike most. Well, maybe it runs behind bone marrow biopsies and dexamethasone. Probably a lot of other thigs I haven’t even experienced yet. I usually just stay home so I don’t have to worry about keeping the jug handy and how to keep it refrigerated.

After I’m done tomorrow morning, I’ll take it to UNC with me in a cooler and hand it over to the nurse there so it can be sent to the lab for testing. Like most of you, I drink about 3 liters of water plus other liquids during the day. I need to have 2 jugs! The first time I did this, I had no idea, and I only had one. Now I make sure to ask for 2.

The National Cancer Institute web site has a search function you can use to look for clinical trials. http://cancer.gov/search/clinical_trials/search_clinicaltrials.aspx. There are other sites that provide the same feature, but I’ll have to research them and possibly list them later on.

I was offered one trial at Duke, which was “A Multi-Center Randomized Study of Vincristine, Doxil, & Dexamethasone vs Vincristine, Doxorubicin, & Dexamethasone in Patients with Multiple Myeloma.”

I took my dex last night and fell asleep without the help of any other drugs. I also didn’t have any trouble staying asleep. This morning I have that speedy feeling I usually get with dexamethasone: rapid heart rate, shakiness, etc. I hope I can remain calm today. One day last week I really lost control and had an explosion of rage.

I have an appointment at the Coumadin clinic today. I take mine in the the mornings so it won’t interfere with my cancer drugs, which I take at night.

Ugh! I lied. I wasn’t able to sleep well last night at all. I was up until 1:30 or so, then woke up at 5:00 am. Next time, I know I need to take the Ambien, no matter what I think is going to happen.

I’m very tired now, and am going to take a Xanax to help me relax. Dex winds you up pretty tight, so even if you’re tired, it can be difficult to get rest. I have that terrible indigestion, so dinner might be out of the question. Dex is pretty hard on the stomach.

Take a look at all the possible side effects of dexamethasone. Click here