Kenneth Shain, M.D., Ph.D., and Marcella reflect on the first line of therapy she received for multiple myeloma in light of her response and reaction to certain treatments.
Kenneth H. Shain, M.D., Ph.D.: We have a classic but tough diagnosis. It took you awhile to get there, but it was your persistence, and we want to applaud your autonomy to get things taken care of. We had all the biopsies and labs done, along with imaging testing, so we all know you have myeloma. And then Dr. [Daniel] Spitz wanted to start you on a three-drug therapy. I’m not sure if you remember, but we started on what was a standard of care then and is still standard of care today, which is a drug called bortezomib, or Velcade; Revlimid, or lenalidomide; and dexamethasone. We call it RVd because we don’t want to say all those words every time, right?
Marcella Worrell: Yes.
Kenneth H. Shain, M.D., Ph.D.: And then you had five cycles of that, correct?
Marcella Worrell: Yes, I did.
Kenneth H. Shain, M.D., Ph.D.: How did that start? How did you feel starting out with brand-new therapy, getting introduced to a brand-new therapy and these things along the way?
Marcella Worrell: At first it was tough. I’m someone who doesn’t like pills or anything like that. He introduced the first set through an IV [intravenous], and that worked. Then a week later, when I got out of the hospital, he gave me pills to take, which was also tough. With the dexamethasone, he told me to take aspirin to help me not have any—
Kenneth H. Shain, M.D., Ph.D.: Blood clots.
Marcella Worrell: Yes, blood clots. That helped, but I had neuropathy. I got a lot of cramping. Every time I had to take it, I was like, “God, please help me,” because I prayed all the time. I didn’t have a good time going through it, but he told me he was trying to get me into a remission state, in which we could probably eventually do a stem cell transplant. So I had to grin and bear it. But I had bad neuropathy. I never had swelling, but I had neuropathy and cramping. I told him every time about the cramping. He’d give me additional things to take, including natural things. He’d tell me, “Try those,” and sometimes they’d help.
Kenneth H. Shain, M.D., Ph.D.: So you went from being on no medications, right?
Marcella Worrell: Yes.
Kenneth H. Shain, M.D., Ph.D.: You were walking through your normal life. Then all of a sudden, we tell you, “Marcella, we’re going to give you three brand-new medications called chemotherapy that will have some side effects, but you may or may not have them.”
Marcella Worrell: Yes.
Kenneth H. Shain, M.D., Ph.D.: Then we give you aspirin, acyclovir, and a bone-building medication. But you’re adding all these other medications to take, and that’s overwhelming, correct?
Marcella Worrell: Very overwhelming. Lots of times, I asked him, “Do I have to take every one, especially the steroids?” That was my worst thing because I’d feel good the day of. But then the next day, after I stopped taking it, I’d have a headache and fever. I’d be crawled up in a corner. I’d snap at everybody.
Kenneth H. Shain, M.D., Ph.D.: Snapping at everybody is very classic for dexamethasone. You’re correct.
Marcella Worrell: But I took it and did what he told me to do.
Kenneth H. Shain, M.D., Ph.D.: You didn’t have a simple time through therapy. For most people—unfortunately not everybody—when you get this therapy of Velcade, Revlimid, and dexamethasone, we give it a little differently today from how you received it then, so there’s less chance of neuropathy. We spread out the dose of Velcade and give it under the skin instead of IV, which all reduce the risk of neuropathy.
For the most part, people can walk around and no one knows they’re getting therapy. Even patients don’t always know they’re getting therapy, which is the best but not always true. As you said, you had neuropathy from the Velcade, which is unfortunately a classic side effect of that. You also had a lot of cramping and things in your muscles, probably from the Revlimid, which does that a lot. They tried different medications to try to help prevent that. Then you had the best dexamethasone example: cranky and can’t sleep. Those are the things that happen with dexamethasone all the time. Usually, I’m told by spouses or family members to lower the dose of dexamethasone because it’s driving them crazy. Those are all things we have to think about.
Transcript edited for clarity.