Today we learn what Chuck’s doctors decided to do to try and slow down his stubborn and difficult to treat multiple myeloma. V-DCEP therapy (a combination of Velcade, dexamethasone, cyclophosphamide, etoposide and cisplatin) is a bit unconventional, but is sometimes used to hit relapsed/refractory myeloma hard and knock it back.
We chose V-DCEP because I felt like I needed to act quickly. Indeed, it was intense – more intense than my transplant. But it also worked beautifully. Within 100 days, my m-spike had dropped to zero, and my IgA numbers were low as well. This was all without maintenance therapy. We were waiting for Pomalyst (Pomalidomide) to be approved by the FDA. When Pomalyst became available, I went on a POM-DEX combo for maintenance.
Unfortunately, I relapsed again at around the six month mark in April 2013. Dr. L recommended repeating the two V-DCEP treatments in May and June.
My next treatment really kicked my butt. I couldn’t eat and the anti-nausea meds didn’t seem to help at all. For motivation, I had to focus on the fact that I had young children–and that this had worked before. I entered my second cycle with much trepidation. Surprisingly, I felt great during this treatment and was able to eat every meal, as my nausea was kept to a minimum. Again, I got a positive result. By two weeks my m-spike was down to .17.
This time, Dr. L decided to put me on CAR-POM-DEX (carfilzomib/pomalidomide/dexamethasone) for maintenance. Even though I’d relapsed on these drugs before, he felt that using them in combination might give a different result. To paraphrase, this combo might be greater than the sum of its parts. I’m into my second cycle, and my IgA has dropped to 34. Apparently, with light chain kappa myeloma, IgA is a better indicator than a m-spike. My CBC numbers look great with hemoglobin back up to 12.8 and hematrocrit at 38. My white blood cell and platelet counts are in the normal range as well. Realistically, the jury is out as to whether the CAR-POM-DEX combo is the reason for my improved counts. These could be attributed entirely to the two V-DCEP treatments. If I get beyond six months without disease progression, Dr. L should be willing to say the new maintenance therapy is working.
As far as my state of mind during all of this, I’ve remained surprisingly positive since the initial shock. My daily goal is to give as little time as necessary to the disease, keeping the lion’s share for myself and my family. Despite having an aggressive form of the disease, I’ve been lucky to avoid bone involvement so far. I don’t know if it’s helped, but I drank tons of milk as a kid, and I’ve never had a broken bone or cavity. I should also mention that I’ve been on Zometa over the past year.
As far as suspected causes for my multiple myeloma, I’d say that living in a Arkansas for 15 years may have exposed me to pesticides. Also, I remember some unhealthy activities as a kid such as burning plastic and inadvertently breathing in the fumes. I joke that I may have sniffed too many mimeograph copies in school as well. Who knows?
Chuck describes his experiences in such a matter-of-fact way. But most of my readers understand what he’s gone through is nothing of the sort. This is tough stuff! I’m sure that Dr L would agree, Chuck’s case is unusually challenging. I’m inspired by his determination and focus, aren’t you?
Chuck’s new maintenance therapy, CAR-POM-DEX, is viewed by many myeloma specialists as the new go-to therapy of the future–sort of a new and improved RVD.
I have been getting a lot of questions about CAR (carfilzomib; trade name, Kyprolis) and POM (pomalidomide; trade name, Pomalyst) therapy as more docs start to prescribe it for their patients. With this in mind, my guest on this month’s on-air support group broadcast will be myeloma survivor, Paula Van Riper from New Jersey. Paula has been on a Pomalyst trial for years. Unfortunately, she relapsed recently. Paula is now using Kyprolis, and it’s working, too! Monday, September 30th at 6 PM, Paula will share her experiences with both new drugs.
Tomorrow I’ll wrap things up, sharing a more personal side of Chuck, his wife, Belle, and family.
Feel good and keep smiling! Pat