Beth Morgan Multiple Myeloma Treatment Blog
My life as a myeloma patient for almost two decades
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.
I spent the day recovering from a GI virus. It started last night and, of course, kept me up all night. I violated my no sugar rule and had some ginger ale. I still don’t feel normal yet, but anything’s an improvement over how I felt all night and this morning.Now I’m trying to replace all the fluid I lost.
My niece had a dance recital tonight, which I couldn’t attend. My sister will get it with her camcorder, I hope.
I have an appointment at Duke on the 21st at 10 am to be evaluated for an autologous peripheral blood stem cell transplant. I am tempted to cancel the appointment and not think about it again. At this point in time, I just don’t want to have one. I don’t know how I’ll feel about it in the future, especially after I’ve exhausted other treatment regimens. I especially don’t know how I’ll feel if I find out I have not responded to thalidomide and dexamethasone or if my disease has progressed.
There are many MM patients who have had not just one SCT, but 2 or even 3. It’s a very aggressive treatment. There’s no way to know how one will respond. If there’s a remission, no way to predict how long it will last.
When I see the people at Duke on the 21st, I’ll have them send kits to each of my siblings to have their blood tested to see if any of them is a 6/6 HLA match for me. They all know about this and have all agreed to be donors if necessary. Statistically, 1 in 4 siblings will be a match. I happen to have 4 siblings. It would be SO nice to have an identical twin. I have a fraternal twin, which is no different than a regular sibling.
Human Leukocyte Antigens (HLA): A series of antigens found on white blood cells and most other cells of the body that are used to determine tissue type. Your HLA allows your immune system to recognize self from non-self. When these proteins are the same for both donor and recipient, an allogeneic stem cell transplant is much more likely to be successful. In stem cell transplantation, the HLA antigens routinely typed for are HLA-A, B, and DR.
My understanding is that the donation process is not really painful. It’s time-consuming and there would be some discomfort involved. Needles in both arms, blood going out through one and back in through the other.
Anyway, I am going to keep my appointment at Duke and get as much information as I can. I will probably have to have a SCT one day, although I’m not planning on it right away (within the next year).
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.
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.)
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.
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.
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.