I haven’t posted any updates lately. The reason is, after having had MM for so long, I just don’t think about it very much. It’s not like it was in the beginning. I used to wake up every day, and that was the first thing I’d think about. That was 2003. It’s just a part of my life now. I’ve been very fortunate to have had few problems.
In January I started on Darzalex, Revlimid and dex. I’d taken Revlimid before, in 2006. You can read all of my previous posts about Revlimid here: https://www.myelomablog.com/?s=Revlimid. I have not tolerated it well, so I stopped taking it at the end of January. In fact, I felt so miserable that when it came to taking that last pill in the bottle, I couldn’t make myself do it. Revlimid causes me to have some really awful GI issues. I think I can understand what people must go through when they have IBS or similar afflictions. Revlimid causes me to have GI cramps, diarrhea, constipation, and some nausea. That was at a 25 mg per day dose. I may be trying a 15 mg per day dose soon.
The reason I may be trying a lower dose is that Darzalex as a single agent (with 20 mg of dex) has not held my MM back. Dara (Darzalex or daratumumab), Rev & dex did a great job up front, though. But since I stopped Rev, the numbers have started climbing.
My doctor wants to try to get me on Pomalyst. In January, we were told that my insurance would not pay for Pom at the same time I’m getting dara. It’s considered an off label use of the combination. He says he thinks he can get it approved this time. If it doesn’t happen, I’ll use 15 mg of Rev.
During the time I was in treatment, I coordinated my doctor visits and chemo with another myeloma patient who lives about 25 miles from here. We traveled to Chapel Hill appointments together and, when we were told the only treatment left to us was a stem cell transplant, we had ours together through The Duke Adult Blood and Marrow Transplant (ABMT) Program in Durham, NC. We even had apartments next door to one another!
One of our doctors started calling us the “myeloma twins.”
I’m really glad to have just gotten the news that Joyce is moving to Pinehurst, which borders on Southern Pines (where I live)! She’ll only be a few miles away, so we’ll get to see each other more often.
I got these results last week. Pretty much the only difference between these results and the last ones is that the IgA is about 200 mg/dL higher. Last time, it was 663. The m-spikes are the same. This time, the kappa/lambda free light chain ratio is just inside the normal range. IgM and IgG are suppressed, and at about the same levels they were in October. Why the increase in IgA? My doctor suggested that it may simply be a normal immune response to something.
Everything’s pretty much the same as it was last time. Still stable. Two m-spikes that add up to 0.8 g/dL. The last time I had blood drawn, the test results were pretty much the same.
The serum free light chains weren’t back yet when I got this. I don’t think about this stuff as much as I used to, so I probably won’t even call in to ask about it. I’ll wait for my next appointment in a couple of months to find out.
I had been seeing the doc every 4 months, but now it’s going to be every 3 months, due to a small increase in m-spike. The doc asked me if I want to start maintenance, but I said no. The m-spike was somewhere about 0.3 five years ago after I had my auto SCT.
This was forwarded to me on the AAMC mailing list.
This is a picture of a puppy currently residing in a puppy mill in North Carolina. Under present state law, because she has “food, water and shelter” she cannot be rescued. Only when she is dead will she probably get out of this cage.
We are hoping (probably against hope) that the legislature might take some time away from passing a fracking bill, to consider legislation that would define the requirements of “food, shelter and water” a bit better than is pictured here, as well as require exercise and veterinary care.
If you agree that this is cruel and inhumane treatment, please let your legislators know. In Moore County, your state representative is Jamie Boles ( firstname.lastname@example.org ) and your state senator is Harris Blake ( Harris.Blake@ncleg.net ). You might also address comments to the Senator Pro Tem Phil Berger ( Phil.Berger@ncleg.net ) and Speaker of the House Thom Tillis ( Thom.Tillis@ncleg.net ).
There are a lot of animals in North Carolina that would appreciate your speaking up for them.