I was diagnosed with MGUS approximately 20 years ago and was being regularly monitored every 3 months. Included in the monitoring were blood tests, full body x-rays, a couple of bone marrow biopsies, ct scans, even a pet scan. Even though I had MGUS, I was being regularly monitored for potential Multiple Myeloma. This situation basically remained the same until April 2023 at which time I learned that my paraproteins had transitioned, not into multiple myeloma, but rather an extremely rare form of Non-Hodgkin's Lymphoma, an LPL specifically named an IgG-secreting Lymphoplasmacytic lymphoma. The treatment for this is the same as it would be for Waldenstom's Macroglobulinemia. Armed with this new information, I found myself scheduled for 6 cycles of Bendamustine-Rituximab chemotherapy starting the first of May 2023. I completed 4 cycles of chemotherapy when my neutrophil level basically disappeared. Due to this, I had to take daily injection of Filgrastim for 4 successive days in the hopes that would help raise my neutrophils to a level appropriate to continue with cycle 5 of chemotherapy which is precisely what happened. However, just before it was time for my 6th cycle of chemotherapy, my oncologist informed me that this chemotherapy had minimal effect on me (my IgG paraprotein) and had actually stagnated and plateaued at a level much below desired so my 6th cycle was cancelled. As of the start of November, I was transitioned to a new therapy, that of a BTK Inhibitor (a type of drug that blocks the activity of a protein called Bruton tyrosine kinase (BTK), which is crucial for the development and function of B cells. BTK inhibitors work by interfering with the signaling pathway that allows B cells to activate and multiply; hence, hindering cancer cell growth. For the past 15+ months, I take 4 - 80mg capsules of this BTK Inhibitor every day. The specific name of the BTK Inhibitor I take is called Zanubrutinib (Brukinsa). Currently, even though the levels of my IgG remain relatively high, I am stable as the Zanubrutinib is not allowing my IgG paraprotein levels to progree or rise; however, Zanubrutinib is not causing my IgG paraprotein levels to regress or decrease either. If things remain as they currently are, I would be taking Zanubutinib for the rest of my life. However, it is possible that Zanubrutinib may stop being effective and, at that time, I would be placed on nother drug. When I was doing chemotherapy, I had to go the hospital but, now that I am using Zanubrutinib, I don't have to go to the hospital as I am able to take these capsules daily at home.
How are you feeling? Do you have energy?