As we have discussed before, Multiple Myeloma (MM) is incurable but NOT terminal. After a stem cell transplant (SCT) - which I had in December 2017 - one of three outcomes will result. The patient will attain a level of controlled disease progression (contained growth of myeloma cells) which is comparable to "remission," the disease will relapse (come back again - needing more comprehensive treatment), or the disease will be refractory (resistant to that treatment - creating the need for alternative courses of intervention). I was fortunate, as are more and more patients with MM, to benefit successfully from my SCT - and reached remission. As a result, I have been on a maintenance regimen since January 2018 - which is keeping the advancement of my disease contained at near zero. Here are some interesting (and encouraging) insights into maintenance and its dynamic.
- The average duration without disease progression after SCT is 5 years. I'm now more than five years past mine, and my myeloma cell count steadily remains one "tick" over zero point zero.
- Each MM patient's maintenance regimen is as unique as their fingerprint. Mine (a once-monthly cocktail of Darzalex and Dexamethasone; plus daily Pomalyst) is doing the trick for me, and will continue to be my mix going forward until its efficacy begins to wane.
- Ongoing and assiduous research is offering more and more alternative regimen choices every day (eg: Carvykti CAR-T therapy) - delivering increased success and duration, if and when someone like me no longer responds to D&D+P.
- People often ask me how I'm feeling (for which I am grateful for their concern). I honestly feel like I could live forever (within reason) and some studies have even shown that maintenance therapy seems to become more effective the longer you take it. Woohoo! It's a win-win: I can keep my MM at bay while waiting for an even more betterer alternative that would basically be the elusive cure we all seek.
- I have some side effects from the long-term medications, but I keep my Onc team well informed of my situation, and actually take more "pills" to proactively stay ahead of side effects than the chemo meds themselves. All part of modern science managing me, my disease, and the associated adverse effects which can make the process undesirable (for me: some well-controlled, slow-rolling peripheral neuropathy).
- With any disease and/or recovery, the biggest challenge is compliance (taking the meds and staying on "course") - a purely human factor, not a medical one. I happen to be the poster child for compliance and I find that my regimen is manageable, non-intrusive and a small price to pay for staying alive (seems like a reasonable trade-off under the circumstances).
Look, having cancer sucks (no two ways about it), but mine could be a lot worse and I'm winning the battle while research is developing the weapons to help me ultimately win the long-term war.
