MDS, whining, needles, stem cell research, blood donations & such

I freely admit I am a wimp about seeing needles (the medical kind) and blood. Particularly my own blood. This stupid MDS (myelodysplastic syndrome) has become quite active this year. I have a local doctor and have been getting the shots he recommended for increasing my red count, as well as a number of different alternative and energy healing modalities. After consultation with the world's specialist in this disease (Dr. Azra Raza) in NYC in February, we decided it was best for me to plan to start Vidaza treatments. And because of our family trip to Italy, I decided to wait till we got back from there to start. The first round of treatment began 27 June.

Vidaza is a chemotherapy drug. I get 2 shots a day for five days, skip three weeks and do it again. During the treatment week I also get Aranesp shots for the RBC, B12 shots and Neulasta shots. Neulasta stimulates the bone marrow to produce more white cells. Vidaza is supposed to kill off the abnormal bone marrow cells, allowing healthy cells to regenerate in their place. This can take a long time. I have committed to a year of this treatment to see if it works. Because of which ones of my chromosomes are messed up, I have a 75% chance that it will, as opposed to 50% chance for the overall population. If it works, I keep doing it forever as long as it works. Or until they come up with a cure. Stem cell research is desperately needed here. And we all know how that has been tanked in the USA during the last eight years.

The side affects from Vidaza are mainly nausea. When they say Neulasta makes your bones ache, what they mean is you feel like you have the worst case of the flu ever with particularly bad aches radiating from your largest bones. Interestingly, Zyrtec can help with that. And they give me pills for the nausea. The first few months of treatment, because so many bone marrow cells are being killed off, my blood counts drop accordingly. This disease has always affected all of my counts, so red, white and platelets have all dropped.

Now we are getting to the whining and needles part of this post. I have had to get blood tests every two weeks for a year or so now, but that's not a problem as long as I don't look. And the Aranesp shots are once every two weeks. Since the end of June there has been alot more stuff with needles. There are the shots (13 or so during treatment week and other assorted ones along the way), blood tests, and now blood transfusions.

Before a transfusion I have to be typed and crossmatched. (That means they take more blood.) I still don't know why I have to do this before every transfusion, but those are the rules. For blood transfusions they use a large needle. I take time to get my iPod going and go off in the zone with some meditation music before I get stuck for those. Each unit of packed red cells takes a couple of hours to get. Platelets normally take less than an hour. Right now I am having to get two units of red cells and one of platelets every two weeks. One week my counts got so low I had to get 4 units of red cells and two of platelets in three days. And on the day in between I had to get IV antibiotic because I had a fever. I do not like the needle things on transfusion days at all. When I go, I am pretty much there all day. OK. So I am done whining now.

At the last transfusion, the doc ordered Tylenol and Benadryl before the process got started. I have to say, that made it a lot better as I slept through most of the day. And the next day I could actually do some things. This morning I have to go get typed and crossmatched for the transfusion tomorrow. I found out I can request the Benadryl so that is what I plan to do. And also on the bright side, the blood centre has wireless internet, so I can take my laptop with me. If I'm not taking a nap, perhaps I'll have a chance to blog from there.

I encourage everyone who can, to please go give blood. It helps more than you can possibly know.