March 2020 update
My bone marrow biopsy numbers came back a bit disappointing at 323 parts per million (PPM). This is up from 40 PPM a year ago. An 8x increase is an order of magnitude, and of course if it were to continue to 8x (or accelerate), that could mean relapse in the future. Talking through this with my doc, a 2 log increase (100x) from my previous 24 PPM would probably be cause for concern (we’re only in 10x territory now). He also said that once my numbers hit around 6000 PPM, it would take about 13 months for the Myeloma to show up in my blood (indicating relapse). So we’re likely at least 2 and maybe 3 or 4+ years away from relapse. No PET scan right now because even at 323 PPM, the concentration is so low that nothing would show up. Despite this news I’m still in sCR (Stringent Complete Response), the second highest remission status. (if I was 0 PPM, it would be sCR with MRD-, which is the highest)
My bloodwork has been great with the exception of a bad liver marker (ALT) in February (110 U/L my worst number in over a year), and a surprisingly normal liver marker in March (49 U/L my BEST number in over a year). The only things I changed between Feb and March were to stop taking Curcumin, and to cut out additive salt from my diet. I’ll continue both of these for the forseeable future. I’m still pretty far away from something that would be concerning to my doc (he said around 300 U/L he would start to worry).
We’re going to continue the 10mg Revlimid for now, and re-evaluate at the end of June.
No health issues other than some bad allergies (my sinuses run 24x7 despite taking zyrtec and flonase daily. I’ll probably see an allergist over the summer), and some pretty awful GI issues. I’ll spare the details.
There are two great Myeloma sites that have started up recently with the mission to collect patient data, help patients find treatments, and use anonomized data to provide info to doctors and researchers. I’m a huge fan of this, and don’t really mind putting my anonymized data out there. I’ve signed over all of my medical records to both. All4Cure have summarized my journey to date. I’ll admit it was strange having my last three years rolled up like this (I’d give this summary a 90% accuracy rating):
MM-832 was 42 years old when he was diagnosed with IgG Lambda Multiple Myeloma in December 2016. He originally presented to the chiropractor with back and chest pain in April 2016 which then continued to worsen. In October 2016 a CT scan noted multifocal spinal lytic lesions including his T12 vertebra. Labs in November 2016 found a Monoclonal IgG Lambda protein of 2.4 g/dl. He did not have hypercalcemia, renal insufficiency, or anemia. A PET/CT scan in November 2016 showed avid lesions in the calvarium, C1, C2, T12, clavicle, multiple ribs, left humerus and left femur. A bone marrow biopsy in December 2016 showed 30% plasma cells by morphology and 2% myeloma cells by flow cytometry. No test for amyloid deposition was done. A FISH panel and corresponding cytogenetics were normal. An MRI in December 2016 noted the C2 lesion extended into the epidural space without compression. He does not have a significant past medical history and his family history is notable for pancreatic cancer in his paternal grandfather. He started treatment with Revlimid, Velcade, and Decadron (RVD) in December 2016. On December 23, 2016, he reported a rash on his arms that was attributed to Revlimid. All treatment was held starting December 24, 2016 because he was admitted for intramedullary nailing of his left femur shaft fracture. After being discharged, MM-832 resumed treatment with RVD in January 2017 but developed worsening Grade II neuropathy so treatment was changed to Kyprolis, Revlimid, and Decadron (KRD). He tolerated the treatment well and a bone marrow biopsy in April 2017 showed less than 5% plasma cells by morphology and 0.03% myeloma cells by flow cytometry. In May 2017 he presented with a fever and had a viral respiratory illness for which he received IVIG and antibiotics. After recovering from his viral infection, he proceeded to have his stem cells collected followed by a Melphalan-conditioned Autologous Stem Cell Transplant in June 2017. He started consolidation therapy with Kyprolis, Revlimid, and Decadron (KRD) in October 2017 but Kyprolis was delayed a few days while waiting for insurance authorization. He increased the dose of Revlimid from 10 mg to 15 mg beginning in the second cycle because he tolerated the treatment well. He resumed Zometa in November 2017 and planned to receive it every 3 months. In February 2018, MM-832 reported new back pain and an MRI in March 2018 showed disc disease at the L4-L5. After 4 cycles of consolidation therapy with KRD, another bone marrow biopsy showed less than 5% plasma cells by morphology and ClonoSEQ testing showed 24 per million nucleated cells. The decision was made to continue maintenance therapy with KRD for 12 cycles followed by maintenance with Revlimid alone. In June 2018, MM-832 presented with 4 days of coughing and low-grade fevers. An x-ray of the chest showed a patchy density in the right middle lobe consistent with infection. He had sepsis and was diagnosed with pneumonia and received antibiotics. He held all treatment and skipped Zometa that month but Zometa was not resumed. In February 2019, he stopped receiving Kyprolis as planned and a bone marrow biopsy showed less than 5% plasma cells by morphology and ClonoSEQ testing showed 43 per million nucleated cells. He continued with single-agent Revlimid. In June 2019, he reduced Revlimid to 10 mg due to fatigue. In December 2019, he had hand surgery for a fractured finger. As of December 2019, he continued with Revlimid maintenance. In February 2020, MM-832 had a bone marrow biopsy that showed less than 5% plasma cells but morphology. All4Cure is waiting for the results from his ClonoSEQ testing. Last Updated: 3–09–20 JW
If you’re still reading, now we’re getting to the good part. Since my last update I went to Miami for the Super Bowl!! It was amazing to see the Chiefs pull through. It was even better on the flight back to San Francisco the next day. I was one of two Chiefs fans on the plane. :)
I also went to Dublin and Amsterdam. I got to see an Ireland rugby match while in Dublin.
And then Rachel and I went to Las Vegas for a weekend. We were supposed to go snowboarding in Lake Tahoe, but since there was no snow, we called an audible.
Despite all of that travel, I managed to dodge the Coronavirus, and am working from home for the next few weeks with these guys:
