Gettin' Real

Early on in my journey, I crafted the tagline "incurable, but not terminal" to establish some realistic understanding and offer some realistic perspective on my disease.  From the very beginning of my treatment, it was postulated that there would be a "cure" for my incurable (though NOT terminal), Multiple Myeloma - MM, before I relapsed.  Relapse (often used in conjunction with Refractory) basically means that the available arrows in my specific quiver of treatment have been exhausted, their collective efficacy has peaked, the advancement of the growth of myeloma cells in my system is slowly beginning to increase again, and it's time to look for another treatment solution.  This is the milestone along my journey that I have reached. In actuality, my "run" with this stage of treatment (Stem Cell Transplant, followed by years of maintenance-level chemotherapy) was estimated to last around 7-8 years, and this Sept 1 marks 8 years since my diagnosis. It is a normal part of the progression of MM (and many other cancers), so I am not surprised nor upset.

The "cure" (it's not technically a cure, it's actually a more comprehensive extension of the PFS period {Progression-Free Survival} than currently attainable) involves a process called CAR-T (Chimeric Antigen Receptor T-cell therapy, which is a cancer immunotherapy treatment that uses a patient's own immune cells to fight cancer), that has been shown to be effective for some blood cancers; which I have. T-cells are part of the immune system and come from stem cells in the bone marrow (mine are cancerous in there).  T-cells naturally help protect the body from infection, and can contribute to the fight against cancer (mine aren't working). After nearly 50 years of research and development, medical science has figured out a way to take out T-cells, re-engineer them to work like they should (cancer is compromising them now), and put them back into me to hopefully work like normal against my cancer cells - which has been proven to be accomplished against MM, and others.

I have a favorite t-shirt that proclaims: The opposite of irony or wrinkly.  As irony would have it (in my life), the CAR-T product that appears to be best for me is called Carvykti (from J&J - https://www.carvykti.com/ ).  This is ironic because in one of my recent turns as an Account Exec at a Pharma Ad Agency (not at Impact, for anyone brave enough to follow my ever-changing CV), I worked on the pitch for this new drug's advertising.  We didn't get the account (and I didn't keep the job) but I learned a lot about it in the process.

As you can imagine, though approved by the FDA (2/28/22), like any and all drugs - there are good things that it offers and side effects as well (often referred to as Adverse Effects - AEs).  All of the drugs that I have taken to address my MM over the past 7+ years have ALL had some potential ramifications; some mild and some major.  I have been fortunate enough to avoid all of the major ones and even most of the minor ones - and I'm still standing.  In full transparency, I was made aware of all AEs each time a new therapy was suggested, and here too, I am being made aware of the AEs associated specifically with Carvykti.  During this treatment process: I am given prophylactic medications to stave off potential AEs, I am very closely monitored for any beginning signs of said AEs, and in the unlikely (but, yes, possible) event of the development of an AE, there are existing remedies that address the issue while allowing the Carvykti to keep doing its thing.

This particular CAR-T drug's treatment period takes about 2-3 months (I'm still learning the timing of all the steps).  A prospective patient goes through a series of preparatory tests to make sure they are an appropriate and fit candidate to require and handle the treatment.  I have completed this battery of acronym tests (PET/CT, ECHO, MRI, PFT, etc), and am charted and ready to continue.  In a recent, single 3.5 hour setting (with the benefit of a Shiley catheter), the necessary T-cells were extracted using apheresis (Apheresis is a medical technology in which the blood of a person is passed through an apparatus that separates out one particular constituent {T-cells in this case} and returns the remainder back to circulation).  Those T-cells have been sent to a lab for re-engineering (a roughly six-week period).  During that six-week timeframe: more tests are conducted to be sure of the decision, preparatory medications are administered to build up AE resistance in one's system, and a specific course of "bridging" chemotherapy is administered to optimize my aNATomy for the incoming reintroduction of my own juiced up / jacked up / fixed up T-cells.  Look out MM cells, your days are numbered!

Knowing what they know about the aftermath of the process, following the re-infusion of my "manufactured" T-cells, I will be very closely observed for the next roughly 8 weeks (e.g: during which time I can't drive). Frequent blood tests are used to track the body's reaction to the CAR-T, some comprehensive-level tests/scans are re-done to measure this new/evolving status against the baseline established before the procedure, and if an AE should escalate to the point of concern (i.e: fever, dehydration, low blood pressure), that would warrant a return to the hospital for a brief stay for the necessary (and manageable) intervention to get the body's balance back on par.  And yes, there are some other more sophisticated (serious) potential transitory side effects which are not worth getting everyone upset about (primarily CRS or seizures).  These are also included in the AEs that I am being openly made aware of, by a team of specialists sharply focused on side effects development, who are prepared to react with the proper targeted response.

To be clear, the CAR-T technology is still NOT a cure (no drug, including Carvykti, offers that result for MM).  But, I will be going from a current period of roughly 12 months of MM remission - while still on a chemo maintenance regimen, to an estimated 3 years of remission - with no maintenance drug regimen required during that period of time . . . off of all cancer-related drugs entirely for the duration of the Carvykti "run."  What about after 3 years of PFS on Carvykti?  That remains to be seen.  But science, trust, faith, humility and humor have gotten me this far - with an incredibly high quality of life throughout the process. So, I'll continue to roll the dice and roll along with the prognosis and the possibilities.

It's been all fun and games so far (pretty much), but now it's gettin' real. Real science, real cool and real results. Phase 2 - Here we go !