For several years now, I’ve been going to the clinic once a month on Saturday mornings for treatment; currently a shot of Darzalex (a cancer fighting drug like chemo but technically not chemo; it's a monoclonal antibody (MAB) - this will matter in another minute below), and an infusion of IVIG (antibodies boost). Once every fourth month, I go during the week and meet F2F with my Onc Dr. S. She examines me, we talk about any changes, discuss meds, etc. - never rushed, as long as it takes for me to understand, and for us to reach an agreement; though little has changed medically - - stable with controlled Multiple Myeloma (MM) over the past 3+ years.
I have been very fortunate throughout my treatment and now ongoing maintenance (5+ years), that there is really very little to complain about. No daily-life adverse reactions or side effects from the varying combinations of cocktails prescribed prior to or until we landed on the current, best one (administering that for about 2+ years now). Because of this, my issues with Chemotherapy-induced peripheral neuropathy (CIPN) are really about the only thing I track and talk about. Unlike the MUCH worse Diabetic Peripheral Neuropathy which can be very painful and cause loss of balance or completely curtail walking; I only feel a fuzziness around the area of the balls of my feet (like sand in my shoes). This sensation began very slightly in my right foot about 4+ years ago, and has s-l-o-w-l-y grown to include the same area and feeling also in my left foot. I recently tried acupuncture to help lessen the present sensation and abate future advancement, but even after going in with an open mind to the practice, I objectively didn't feel even slight appreciable results after 5 visits (over 5 weeks) - works for some / not for me.
Seeing as how CIPN comes from taking chemotherapy (as the name explains), and knowing a little bit about cancer treatments (some are chemo-based and some are monoclonal antibodies; almost all cocktails are a mix of chemo and the emerging class of MABs), I wondered if I could be on an all-MAB maintenance instead - to help mitigate the CIPN. In my quarterly visit with Dr. S, we talked at length about this idea.
There really isn't an all-MAB solution/cocktail. But as she explained, that since my light chain "numbers" have been so steady at virtual 0 for the past 2+ years (from my cocktail of Pomalyst pills at home (chemo) and once-a-month Darzalex (MAB), she now suggests I can suspend taking the Pomalyst for the next 3 months until I see her next, and we can talk about the results of that change (ie: Am I noticing any improvement in the CIPN?). I will still get the Darz and IVIG once a month at the clinic, and she will closely monitor my monthly blood results to see any uptick of MM cells registering above 0. After these next three months, she doesn't really anticipate any increase of my MM, but there would be plenty of time to switch back to taking Pomalyst without any dangerous advancement of my MM, if it became an issue.
Aside from the potential to see some stopping or even possible reversing of my current fuzziness, what this means medically is that I am technically in remission of my MM (at statistical 0; as explained by Dr. S). I recently completed a pretty intense one-week job in LV @ CES. It wasn't about heavy lifting or running running around, but it conclusively and objectively proved to me that for a 67-year-old with cancer, I am in pretty good health. After several 14+ hour days which involved on average 25,000+ steps each day, I experienced no shortness of breath, debilitating exhaustion, waning of stamina, or other adverse effects from what I was doing. My medicine-taking compliance, consistent M-F morning treadmill walking for cardio exercise, reasonable diet, and responsible lifestyle choices have all paid off !
As mentioned, Dr S will continue to closely monitor my blood work. She will be employing the very latest diagnostic capabilities of MRD (Minimal Residual Disease is the small number of cancer cells in the body after cancer treatment. An MRD positive test result means that disease was still detected after treatment. An MRD negative result means that no disease was detected after treatment. I am currently "negative"). She has also ordered a PET scan for a few days before I see her next time in April (Positron Emission Tomography scans detect early signs of cancer, heart disease and brain conditions. It involves an injection of a safe radioactive tracer that helps detect diseased cells). And then she will conclude all of that progression of diagnostics with a Bone Marrow Aspiration (an in-office procedure which is the MOST conclusive test for the presence of Myeloma in my marrow - the birthplace of the cancerous cells).
At the end of our chat, I said that I didn't want my focus on a Quality of Life (QoL) situation to compromise her greater medical stewardship of my disease (again, my current state of CIPN doesn't hurt or hinder my locomotion). She reassured me that she is about QoL as much as she is about medicine/science - and seeks to always maintain that balance (pun intended). I am: glad she is partnering with me on this choice to address my CIPN, guardedly optimistic about any stoppage or reversal of my CIPN (accepting the fact that seeing no improvement at all is altogether possible, but at minimum getting off of chemo for as long as it's safe/possible), and pleasantly surprised to know that I am technically in remission (I feel good, and now it has a name). I will share more details as each step progresses.
