My Myeloma History
For those of you who haven’t followed along from the beginning, let me explain how we got to elotuzumab treatment.
No. There is too much. Let me sum up.
Once upon a time (2018) I was diagnosed with multiple myeloma when my chiropractor sent me for x-rays after months of me complaining to doctors about my back pain. To be fair, back pain is almost always caused by a muscle strain, and myeloma is rare, and typically seen in people two decades older than me.
Anyway, I started on the dex-velcade-revlimid initial treatment cocktail, but when the velcade gave me terrible neuropathy in my hands, and my M-spike started to climb, I had my autologous stem cell transplant (ASCT, or around these parts, just SCT). It worked, but my m-spike didn’t go to zero. For “maintenance” therapy we started daratumumab and 10mg of revlimid.
Dara, as it is affectionately known is the current darling of the multiple myeloma treatment world. It works very well, and is less toxic than a lot of other treatments.
And, that’s when the wheels came off.
My white blood cells and neutrophils plummeted. We stopped the dara and dex, but it was too late. Eventually with zero nuetrophils, I ended up in front of the ear-nose-and-throat (ENT) doc who wheeled me from her office in the outpatient building straight into the emergency room to prep for surgery.
Do not pass go. Do not collect $200.
I had lost my stem cell graft. It might have been the dara.
Although, my oncologist says if it was the dara, that’s a case study. Unfortunately, the only way to find out is to give me dara again and see if it ruins my immune system. Neither me, nor my doc, is willing to take that chance.
As an upside, after coming close to death and getting a LOT of transfusions, including having more of my collected stem cells infused, it turns out my new “transplant” worked. Every test for myeloma is negative including the COLONOseq test that can detect 1 in 105 myeloma cells.
Long-story, made short: MRD-
My doctor wants to keep it that way.
My Elotuzumab Treatment Plan
I just got off the phone with the pharmacist, who is apparently a required step toward getting the elotuzumab (I’m gonna call it elo from here on out) transfusion. I also have to talk to the nutritionist *power eyeroll*.
Remember I’m MRD- here, so we aren’t trying to knock down active myeloma, we are trying to eliminate any tiny traces, and when it tries to come back, be there with stuff already circulating in my blood stream ready and waiting to kick ass.
I don’t know why (I’ll research it and write it up someday), but dexamethasone goes with myeloma treatment like bread goes with sandwiches. So, my infusions will start with dexamethasone. It’s only 20 mg instead of the usual 40 mg. Again, that’s the benefit of being MRD-, you can take the lighter dose.
Elo is preceded by some pre-treatment meds, mostly allergy meds. Then, it’s infusion time. They start slow. The first one takes 4 hours. I get them weekly for two cycles (4 weeks per cycle) and then down to monthly. By the end, they should only take 90 minutes.
I’m gonna need a good book.
Maybe my next post can be book recommendations for myeloma infusions and other treatments 🙂
Then, elo works best with pomalyst, or pomalidomide. According to the pharmacist it is chemically very similar to revlimid. But, we are going very light on the dose, 1 mg every other day. Like Revlimid, it has to come from a specialty pharmacy which will mail it to me. The cost will undoubtedly be another indictment of the American healthcare system. Fortunately, I’m one of the lucky ones with good insurance.
For me, after clearing my out-of-pocket-maximum the first month, I get the free healthcare most Americans wish they could have. In other words, I’ll never pay a penny of the $10K+ they likely charge for pomalidomide. I do however have to answer their questions about not getting pregnant (pomalidomide causes birth defects), and then wait for them to overnight the package to me, which requires me to hang around all day because it is a signature required delivery.
A small price to pay to keep the myeloma away until they can find a cure.
So, that’s it. It all starts next week.
Wish me luck.