Category: General

I have no appointments today, and am over the effects of my weekly dex pulse, so I am going to enjoy the day. There are things I can do at the office, errands I can run and things to do around the house. My brother has been here fixing things and taking care of the yard, so there’s not a lot to do here. I’ll just start the day with some red tea.

When you have a disease that has the potential to kill you much sooner than you expected to go, you start thinking about things differently. You also think about things that never occurred to you before at all. I find myself being envious of older people. I wonder if they know how lucky they are to be 60 or 70 years old? Possibly not. I never appreciated my own good fortune. I took it for granted. The funny thing is, I now consider myself lucky! I even said that to my doctor yesterday. I am lucky that my MM was found before I became very sick or had broken bones. I’m lucky that I have a supportive family and staff at work. There are a lot of things to be grateful for.

Dr. Orlowski cleared me to use Zometa again, so I had a 30 minute infusion this morning. I hate having a needle in my hand, but that seems to be their favorite place for it. It makes it difficult to do anything. I normally take my Palm Pilot and play solitaire. Today I played left-handed.

This afternoon I need to go to the coumadin clinic and then to see my primary care physician for a check up. He just likes to make sure nothing falls through the cracks. He’s a good guy. I have him to thank for finally finding out what was wrong with me.

I appreciate you for doing this website. It is a marvel. Thanks. Many myelomics need a place just like this…non intimidating, friendly, hopeful. Please continue to keep us posted about your activities, life and treatment. We are al in this together! (Still jealous “cause you have the best doctor!) B

Dr. Orlowski put me on coumadin as a preventative for deep vein thrombosis. One of the requirements of being on the drug is weekly testing to make sure the blood is at the desired International Normalized Ratio, or INR. An INR of 2.5 to 3.0 indicates the appropriate dosage. I’ve been enrolled in a Coumadin Clinic to keep tabs on my INR. My first blood draw will be tomorrow. For a while, I’ll report to the Coumadin Clinic at least weekly to have my INR monitored. I’m used to having lots of blood drawn now. I’d estimate that I’ve had at least 30 venipunctures since January!

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

I took my weekly dexamethasone (generic for Decadron)dose a few hours ago. I’ll be able to sleep tonight, and should be able to sleep tomorrow night too. I have an rx for Ambien, in case I need it. Dex produces some side effects that wear off a day or 2 after I take it, like bad indigestion and hiccups. Some of the other side effects stay with me all the time, like a puffy face. My hair is thinning out – even my eyebrows. Karen Duffy, the author of the book mentioned below, was on high doses of steroids to fight her disease. She mentioned that she used Rogaine to fight the hair loss. She had plastic surgery to change the appearance of her face! One thing I wonder is, are these changes permanent? Or will things return to normal once I can either cut my dose or eliminate it entirely?

There’s been some question about whether people with MM should use calcium supplements when being treated with bisphosphonates (Zometa/Aredia). Most MM patients receive one or the other by IV every 4 weeks or so. ZOMETA ? (zoledronic acid) is a treatment for hypercalcemia of malignancy (HCM) and for the treatment of bone metastases across a broad range of tumor types. These tumors include multiple myeloma, prostate cancer, breast cancer, lung cancer, renal cancer and other solid tumors.

Because MM breaks down our bones and releases calcium into the blood stream, some people think we need to stay away from calcium supplements. I asked my doctor about this and here is his reply:

     Some people who receive Zometa develop bony
     aches for a few days afterwards, and can also have muscle irritability
     and spasms. This is probably due to the ability of Zometa to decrease
     calcium levels, making nerve fibers and muscle more irritable, and hence
     the recommendation for calcium and vitamin D supplementation. Generally
     an over-the-counter supplement like Caltrate 600 + D (with 600 mg of
     calcium and 200 IU of vitamin D), one tablet a day, or its equivalent,
     is sufficient. 

I’ll start taking the supplement this week. My next infusion is Wednesday at 10:30 am.

I just got email from Dr. Orlowski that my IgA is now 911 mg/dL, which is almost a 10% drop since May 15th, when it was 995 mg/dL.

This is all I have for now. I know that he was going to do a CBC and test C-reactive protein, as well as beta-2 microglobulin. I asked to have the full report faxed to me. I had a CBC done in Pinehurst on Friday, and was told that my hemoglobin was 14.5!

Keep in mind that I started treatment on April 4, 2003. I think this is a good response for about 2 months of treatment and the minimum thalidomide dose.