Exploring Treatment Options: Navigating the Path with Multiple Myeloma

It's hard to believe it's been more than a year since I last wrote. It wasn't due to having nothing to say. On the contrary, a draft is sitting in my account that I started last January titled, "Exploring the Depths of Moral Confusion." Not exactly light reading. I find myself feeling a sense of...resignation, I suppose, would be the best word to describe it. I’ll get into that later. There is even a "Cat Musings" post that is swirling around in my brain. John provided the title for it'—'AlCATraz'—a play on my knee-jerk reaction to Andre peeing on my bed again." (I'll save that saga for another time.)

Medical Updates

On the medical front, I now see my oncologist or NP every two months. The visits include a 30-minute infusion of Zometa, a bone-strengthening drug. My last visit was on April 3rd with Dr. Joudeh. As usual, he went over the lab results that were available during my visit (all normal) while we anticipated getting the results of my serum protein electrophoresis and immunofixation, the tests that show the levels of my Free Kappa Light Chains and any upticks or spikes, called "M-Spikes," in my Monoclonal Immunoglobulin. My Free Kappa Light Chains have been elevated in previous tests; however, the results of the protein electrophoresis consistently show M-Spikes are "Not Observed," an encouraging sign.

A few months ago, I asked Dr. Joudeh what the treatment would be if I had a relapse. Would I have another stem cell transplant? He told me the chances of surviving a second transplant were extremely low (like 8% or something), so it really is not an option. The elevated levels of Free Kappa Light Chains might indicate a greater likelihood of relapse, so Dr. Joudeh advised me to establish a doctor/patient relationship at a cancer hospital of my choice.

Of course, my first choice would be the Oklahoma University Health Stephenson Cancer Center in Oklahoma City, but my doctor retired shortly after my stay there in June 2021. Plus, it's more than 12 hours away by car. The closest highly rated cancer center to me would be the Mayo Clinic in Jacksonville, Florida. Dr. Joudeh told me he would put in a referral for me, but after my visit, I went to their website and registered. I should hear from them sometime in the next several days. Jacksonville is about a five-hour drive from Navarre, so I would likely stay overnight.

The purpose of becoming an established patient there is to investigate whether I should be treated for MRD, Minimal Residual Disease. I don't know what will be involved yet, but I suspect they will want to do a bone marrow biopsy. At one point in my treatment a couple of years ago, Dr. Joudeh informed me that my myeloma was non-secretory, meaning it did not secrete into my blood. For that reason, biopsies are more dependable in determining the status of my myeloma. In his clinical notes, he classifies it as ", ISS 1, IgA kappa." The "ISS" stands for "International Staging System." Unfortunately, most of the research material I find is written for physicians, difficult to understand, and dry as a bone. This morning, however, I found a site for dummies that seems helpful. If you'd like to check it out, click here.

For reference:

• The normal range for Kappa Light Chain, Free is 3.3 - 19.4.

  • My results from my last test in January: 49.17 (mg/L).

• The normal range for Kappa Light Chain Ratio, Free, Serum is 0.26 - 1.65.

  • My result: 2.86.

Now, I don't know for sure what those numbers mean, but it doesn't exactly look encouraging.

If I've left you with more questions than answers, that makes two of us, which is why I'm eager to take this next path in my Multiple Myeloma journey to the Mayo Clinic. I'm not discouraged or fearful. I do feel tired...pretty much all the time. As always, I appreciate your thoughts and prayers.