Since my last check a few weeks ago, my serum IgA is up almost 200 mg/dL. I guess that’ll teach me to stop my thalidomide. It’s at 1044 mg/dL now, and hasn’t been that high since before last May. I wanted to finish my masters degree before I do a transplant, so I need to keep it under control until then (summer and fall semesters are the last ones). I’m going to take 40mg of dex on Fridays and 20 on Saturdays, starting tomorrow. We’ll see how that goes when I get labs done next month.
Some things are different for me now. I guess that’s common when someone is diagnosed with a deadly disease. I really noticed it today when I was at UNC, waiting to see the doc. Someone’s baby was crying non-stop. His mom was having her labs drawn, and one of the nurses was carrying him around, trying to get him to stop. In the past I would have been thinking, “Someone please shut that annoying baby up.” But today it made me cry too.
I saw Dr. Orlowski at UNC today. My thalidomide has been stopped and I am now going to be taking 40 mg of dex once a week, followed by 20 mg the next day. We’re going to see how I do on that, and think about what will come next in the meantime. I’m just not ready for that transplant yet.
I had an abnormal ALT today. I’ve never had that before. He didn’t seem alarmed at all, so I won’t be either.
Dr. O. told me that he was talking to some people at Georgia Tech last night about a proteasome inhibitor they’re working on for solid tumors. He thinks it could be used with MM too. He said it would probably be a few years until anyone can use it.
I had a test done to determine my m-spike to see if I could enroll in the Revimid (Revlimid) trial. It turned out my m-spike was 0.2 mg/dL. The study required an m-spike of 0.5 or higher. Mine was lower than it’s ever been in the history of my MM. I don’t qualify to be in the trial, but that’s not a bad thing. The research nurse said she hopes Revimid will be approved for use soon.
The results of the lab are posted online – choose “Home” from the menu on the right.
I completely changed the MMSupport.net web site. Now it looks less cluttered and a little less primitive. I also added forums. Go check it out at http://www.mmsupport.net. There’s a search function too.
I went to see the Titanic Exhibit today. It wasn’t quite what I expected. Not as many artifacts as I hoped. Still, it was interesting. As we entered the exhibit, each of us was handed a boarding pass with the name of an actual passenger on it. At the end of the exhibit was a list of the passengers and crew — those who survived and those who didn’t. My boarding pass had the name of a third class passenger who did survive. I was surprised! Only about a quarter of the steerage passengers on the Titanic survived. If the exhibit is coming to a city near you, I’d say it’s worth seeing.
I’m having a blood test (SPEP) today to prequalify me for a clinical trial being conducted at Wake Forest (Revimid + dex vs placebo + dex). This ended up being a rush, because the drug company (Celgene) faxed them yesterday to tell them they were going to close down enrollment on the 17th (next week). I thought I had a little more time to think about it. In order for me to be allowed to participate, I need to have an m-spike of .5 or greater. The last time I had it tested was October, and I had 2 m-spikes: .2 and .3. Ideally, I want my m-spikes to be lower! I would be disqualified for the study, but that’s fine. If it is higher though, I want to participate.
I can’t take thalidomide anymore because I don’t want the nerve damage to get any worse than it already is. Thalidomide and dex have allowed my MM to be stable, after a significant initial impact on my monoclonal protein. I’m in my 12th month of taking thalidomide now. I can always go back to it later if I need it.
I had dex at the start of the month (March 1-4). This time I had PVCs, which was a new thing for me (as far as dexamethasone is concerned). I’ve had PVCs before, but not so much with dex, and not to this extent. PVCs are premature ventricular contractions. PVCs interrupt the normal heart rhythm and cause an irregular beat. This is often felt as a “missed beat” or a “flip-flop” in the chest. I know what they are, because I’ve had a Holter Monitor in place for 24 hours before to try to diagnose the problem when it first arose some years ago. It’s an uncomfortable and annoying feeling, but the cardiologist called it benign at the time.
I talked to a research nurse at Wake Forest University about the Phase III REVIMID Clinical Trials they’re running. There’s a lot of dex involved, and that scares me. I can handle 4 days a month, but I’m not sure about 12. I’m trying to decide what to do. The reason I am even thinking about it is because of the neuropathy I’m feeling as a result of my months on Thalomid. The nurse did say that the dex doses can be cut down if there are too many side effects.
The other uncertainty about the trial is that there’s a placebo arm. This means that I could get just dex and no Revimid. If my MM were to advance while on this trial, and it turned out I was taking the placebo, I would be given the real drug.