I feel the same this morning. The routine was the same; feed the dogs and cats, help get Pattie out the door and off to work. Yet everything is very different. Yesterday I learned that my myeloma is active again.
It’s only a number on paper. But the impact packs a real wallop!
Yesterday I received some disarming news at my three month check with Dr. Melissa Alsina, myeloma specialist at Moffitt Cancer center in Tampa. To bring you up to speed, my myeloma became active after a short, 10 week remission last summer. Fortunately, two 6 week courses of RVD (Revlimid, Velcade, dexamethasone) were enough to keep my relapse in check at a steady 0.2 M-spike.
Subsequently, a maintenance dose of Velcade and dex had held me stable; that is until now.
I had no reason not to expect the number would be the same this time. Sure, I understood I would be likely to relapse in the near future. But not this time–not so soon.
Those of you that read MMB regularly know that I have an excellent relationship with Dr. Alsina. She’s direct, and can be perceived as a bit distant at times. I know better. That mind of hers never stops working. I’m lucky to be working with her.
We always talk shop upfront: where we’ve been traveling and about what’s new in the field. That said, I could tell a few minutes into our meeting that she was a bit distracted. So I cut myself off and asked, “So doctor, how are my numbers? Still 0.2?”
She shifted uncomfortably in her chair and opened my file, as if to check if the number there might have magically changed. “No Pat.” She said quietly. “Your number has gone up.”
I sat a bit stunned–but no big deal, right? “So what is it? 0.3? 0.4?”
“It went up to 0.5.” She responded. “But that’s still statistically a very small jump.” She said, encouragingly. “Technically it isn’t a relapse. This number would need to be up to 0.8 or even 1.0 to confirm that.”
Nice try, doctor! She was well aware of why I would be so concerned. Dr. Alsina understood that 0.5 has been a bad number for me. When I relapsed three months after my stem cell transplant in the fall of 2011, a PET scan showed that I had already developed several measurable lesions–and a number of other suspicious looking “hot spots”–at an M-spike of 0.5.
As she continued, I started asking questions so quickly she looked me in the eye a bit sternly, saying, “If you give me a chance I’ll explain.”
Oops! Dex day! Not that it seemed to be helping at this point…
Did I forget to mention how deeply Dr. Alsina cares about her patients? I knew from past discussions that this type of news was almost as hard for her to deliver as it was for me to hear; the downside of not keeping that invisible wall between doctor and patient.
The next all important question: What to do next? Dr. Alsina scheduled me for a follow-up SPEP test and meeting in one month. “If your number goes up, we’ll address it immediately and adjust your medication.” She said, continuing, “If they stay the same or drop, we’ll stick with the Velcade and dex.”
A prudent plan. At this point, most doctors wouldn’t be willing to speculate about possible new therapy options. But Dr. Alsina was great, laying out what she felt most comfortable doing next. “All you have ever used are Velcade, Revlimid and dexamethasone, correct?” “Yes.” I affirmed. “And don’t forget high dose melphalan; we know that didn’t work.” I said, referring to my failed transplant just over two years ago.
Dr. Alsina continued. “I’ve had good luck adding Cytoxan to Velcade in cases like this. It’s oral, and side effects tend to not be so bad. If that doesn’t help, maybe Pom (Pomalidomide/Pomalyst) and dex.”
“And don’t forget Kyprolis!” I added, enthusiastically. “Let’s save that one.” She said, revealing what she felt was our best, last bullet.
We also discussed thalidomide and even bendamustine. I even volunteered to transplant again if she thought that might work, letting her know that everything was on the table.
Being a transplant doc, I was surprised by her response. “No, I don’t think I would do that.” She paused, then said, “Pat, you aren’t an average patient–traveling, speaking to groups–quality of life is important and you need to continue to work.”
I loved that! She was going to patch me up and help keep me going. I was touched by her acknowledgment that what I do is important. But it didn’t change the fact that my myeloma was active again.
I’ll write a follow-up post about all of this tomorrow, sharing Pattie’s perspective. In the meantime, I wanted to pass along the link to last night’s Myeloma Cure Talk broadcast about clinical trials. It was very instructive:
Lots of interesting information about clinical trials from our distinguished guest, Dr. Ajai Chari; he’s a big fan of the MMRC, I might add. My fellow panelists and callers asked some pointed and substantive questions–and I was very impressed with Dr. Chari’s answers. I think you will find listening worthwhile.
Feel good and keep smiling! Pat