Author: Beth

I was diagnosed with MM in January of 2003. I underwent various treatments, including thalidomide/dex, revlimid/dex, dex alone, a clinical trial of CNTO 328, and Velcade, Doxil and dex until late August, 2007, when I had an autologous stem cell transplant after high dose melphalan. I experienced what's known as a very good partial response (VGPR). Since then, my myeloma has been stable.

Coumadin

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!

Not enough sleep!

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

Dex dose

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?

Calcium and bisphosphonates

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.

SIEP

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.

Date IgA IgG IgM
May15 995 274 10
June 11 911 292 8

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.

Argh

I made a nice long scratch on my new van today at the mailbox. I think it can be buffed out. I hope it can.

This weekend I’m reading Model Patient: My Life as an Incurable Wide-Ass by Karen Duffy. Karen was diagnosed with sarcoidosis in 1995. The book details her experiences before dx, during diagnosis and treatment, and after. After this, I’m going to look for some purely escapist fiction to read. Let me know if you have any suggestions.

Lambda

Dr. Orlowski told me that people who have MM with Lambda light chain specificity are more prone to kidney problems than those with Kappa. Not only do I have the less common heavy chain (IgA), but I have Lambda light chains.
This is a good bit of information about light and heavy chains in MM.

UNC

Yesterday I had my first appointment with Dr. Orlowski at the Univeristy of North Carolina in Chapel Hill. I felt very comfortable there and liked Dr. Orlowski and the staff very much.

I told Dr. O. that I’m not interested in a transplant at this time, but he asked me to talk to the transplant doctor in a few weeks. I agreed to do that for informational purposes. He said that they will support whatever decisions I make concerning my treatment and work with me for the best outcome.

Dr. O. added coumadin (warfarin is the generic I received) to my meds. It’s a blood thinner that will act as a preventative for deep vein thrombosis (DVT), which is a possible side effect with the use of thalidomide.