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.

Citrus

I ordered a box of mixed citrus from Starr Organic last week, and they arrived in good shape. The trouble is, it’s more fruit than I can consume. Some of it has gone bad already, unfortunately. This morning I made juice from a grapefruit, 2 oranges and 1 tangerine. It was more than I could drink at once. I’ll be drinking lots of citrus juice over the next few days. Anyway, I would highly recommend their produce to anyone who’s looking for organic citrus. They also sell avocados and mangos, among other things. Check out their web site for their selection. I may join their monthly organic plan.

Waiting

I called in to my local oncologist’s office this morning to have them call me when they got the results of yesterday’s bloodwork. I’ve been waiting for a call back all day. I don’t even know if they’re in today. All I can do is wait. One time I called Dr. Richardson at Dana-Farber. He called me back on a Sunday! I bet he never takes a day off.

I want to know what my IgA is, especially. I also need to know my creatinine level, since I have an infusion of Zometa on the 20th. People who are taking thalidomide need to pay close attention to their creatinine when they’re also using Zometa. (All MM patients need to stay on top of their creatinine levels, really.)

Dentist

My dentist is going to have me come for cleanings three times a year now. She said that she wants to keep the bacteria levels down in my mouth. Sounds like a good idea to me. She also said that she will have me take some antibiotics prior to cleanings. When they’re poking around in your mouth, some of that bacteria can get into the bloodstream.

It’s important for those of us with MM to take good care of our teeth and pay attention to oral health. Next time I see my dentist, I’ll get a better explanation of this and post it here.

Platelets & RBC

When I look at my labs over the last few months, one thing I see is that my platelets drop each time. They’re still within the normal range, but it’s a helpless feeling I get when I see that number go down with each successive report. I think aspirin could be affecting my platelet count. I take one 325 mg aspirin per day as a preventative for DVT that may result from the use of dexamethasone and thalidomide. This is something I’ll have to ask the doctor about.

My red blood count is also down. Lower than I’ve ever seen it before. I had another CBC done today and will see the results tomorrow, so I’ll know if it was just a one time thing or not.

Labs

Shrinking

I’ve lost 3/4 inch in height from disc compression! No fractures, thank goodness. This must have happened over time. It had been a while since anyone measured my height. I used to be 5 ft 5.25 inches tall. Now I’m 5′ 4.5″. Yikes. I still tower over my mom, who is 4′ 11″ (if that).

Letter Writing

Today I spent the day printing letters for the IMF “Write for the Cure” campaign. I will be sending out 40 letters (to practically everyone I know), asking for donations to the IMF to help fund research. I hope people will respond and not just throw them away.

We are also going to work with the MMRF to try to get donations. I think next spring we’ll even have a golf tournament to try to raise money.

Velcade

Velcade was approved for use by the FDA today. This gives many new hope. I have heard from other MM folks that Velcade has been particularly effective against IgA MM, which is what I have. It has been reserved for use with patients who have failed at least 2 prior treatments. It’s not intended as a front line therapy. I expect many of us will eventually benefit from it. Here’s the Millennium Press Release.

Dex day

Today was the first of my weekly 40 mg dex doses. I will do this every Monday until I’m told to stop. I woke up at 6 am and took it then. Now I feel speedy. My heart rate is up and I feel it doing its thing. It does wear me out. I’m feeling tired already. I suppose after a few weeks or a month of taking dex weekly, I should adjust and not feel so strange. Correct me if I’m wrong!

After the 4 pulses (4 days on and 4 days off), I think I had what was withdrawal. Even my teeth became sensitive. I had headaches and some aches and pains. Did anyone else have this?