Thursday I ran an emotional post about being “myeloma free.” Everyone understands that’s only an expression, right? Few myeloma patients/survivors are ever truly cancer free.
That’s one of the infuriating things that sets our blood cancer apart from so many others. Once it develops, it is nearly impossible to ever rid ourselves of myeloma completely.
I understand that there may be exceptions. New diagnostic standards are breaking things down to the nth degree. A complete response (CR) used to be the standard. Now their is sCR, MRD negative and others soon to follow.
I know that some of you feel that you’ve beat the odds and are myeloma free. And who’s to say you haven’t? Total Therapy, allo (donor) transplants have the potential to do that for a handful of patients.
But here’s the thing. There’s still no guarantee the myeloma won’t come back. It’s sneaky like that.
For most cancers, the five year “cancer free” mark is a milestone; an arbitrary point in time that means the percentages are in your favor–that a survivor’s remission is likely to last.
And for multiple myeloma patients? Five years means you’re that much more likely to relapse sooner rather than later.
I’m not here to argue. But I’ve heard from too many patients who have relapsed eight, ten, twelve, fourteen–even fifteen years out.
All of this makes it vitally important that we appreciate and celebrate our victories–even the small ones–and try not to dwell on the “what ifs.”
Personally I’m bad at that; I’m always looking ahead.
So indulge me and let’s look ahead. If my next bone marrow biopsy (BMB) is clear like the last four have been–and the faint band of monoclonal protein that showed up on my last SPEP test fades away–I’ll be in an old fashioned CR. That’s good enough for me!
Some obsess over doing everything humanly possible to destroy the few remaining, measurable myeloma cells from their bodies. But as I shared above, there’s still no guarantee that it won’t come back. Is there ever going to be a test that can guarantee that our myeloma is gone? I’m not convinced.
I’ve learned over the years that stable is the key. In CR, not in CR; it really doesn’t matter, other than for our own piece of mind. The battle is all about keeping our myeloma in a passive mode.
So what is Dr. Tricot’s next step? Consolidation.
Everyone should understand that induction is initial therapy in order to prepare us for a stem cell transplant, or to try and reach CR–or a very good partial response (VGPR) and stable disease–if transplant isn’t a choice or option. Then everyone talks about maintenance. Once our myeloma is “gone” or stable, do we use maintenance, what do our doctors prescribe as maintenance, and for how long?
For some, consolidation is the next step following transplant; a heavier combination of chemotherapy if a transplant or other therapy hasn’t been as successful as hoped. Or in the case of Total Therapy, consolidation is used as part of the Total Therapy protocol; another way to continue to hit any remaining myeloma hard in an attempt to wipe it out.
After hearing the good news last Thursday, I had forgotten that my specialist, Dr. Tricot, is an old school Total Therapy guy. As an argument to justify a second (tandem) transplant, the hope of a lighter, easier to manage maintenance therapy schedule was dangled in front of me like a carnival prize. But I forgot to anticipate consolidation. Four months of hard hitting chemotherapy, designed to build on gains made from the transplants.
If and when that works, then I was told we can discuss a lighter ongoing maintenance schedule.
I’m OK with it all. I knew this would never be a picnic, with me so far along on my myeloma journey. Heck, I never expected to have a real shot at reaching CR. It’s all a bonus!
Kyprolis kicked my butt the first time I tried it last spring, but that was with Cytoxan. I’m hoping it was the Cytoxan that made me so sick, because it was bad enough to nudge me toward transplanting again. I figured if maintenance was going to be this hard, I might as well transplant!
I can tolerate the pom. It sometimes leaves my mind a bit cloudy, but it doesn’t seem to aggravate my peripheral neuropathy or drop my white counts very much.
How will my body react when the pom is teamed up with Kyprolis? I’ll know soon enough; I start the new combination therapy January 4th.
For now, I’m trying to embrace a new, myeloma free mindset. It may just be temporary, but emotionally it sure feels good! Physically, too: I’m feeling less bone pain now than I have for nine years. Guess my body really is sensitive to active myeloma bone lesions. No myeloma, less pain.
I’ll take it!
Feel good and keep smiling! Pat