7-1-2022 Note: I feel decent. I do what I want: garden, golf, walk, play music, and chase the grandkids. I accomplish these activities with varying degrees of fatigue. I have serious neuropathy in my feet that creeps into my lower legs. I have bone pain in my pelvis and right femur. The pain is manageable. I suspect it is arthritis, not bone lesions from the MM. Shortness of breath occurs due to a recent drug, but we have stopped all treatment for the time being. So, we wait and watch.
December of 2021 marked 14 years since diagnosis. I don’t know at what point we will re-start treatment. There are options for clinical trials. My preference, though, is an advanced therapy called Car-T. It’s a complicated process. I meet the criteria for acceptance, but the slots are limited. I’ll need a bit of luck to get accepted. I’ve got my name on the waiting list of two cancer treatment centers. My fingers are crossed.
Early in 2020, I developed osteonecrosis of the jaw. It presents itself as bone exposure. We are managing it conservatively, with oral hygiene that now includes a mouthwash twice a day. Previously, I had taken Zometa (a bone strengthener) once every three months. It is most likely the culprit behind this development. It is no longer part of the regimen.
In the summer of 2020, I experienced a pulmonary embolism. These are associated with the drug Revlimid. Further evidence, unfortunately, that treatments for cancer may sometimes be double edged. I take a blood thinner, Eliquis, to protect against clotting. More and more, especially with the last regimen, I experience shortness of breath. It can be scary.
Blood labs: CBC, Chem Panel, Serum Free Light Chain Assay, and Serum Protein Electrophoresis monthly.
Clinic with oncologist once each month to review lab results.
I will update the results from three important labs:
M-spike, the clearest indicator of cancer activity. (Graph above)
Creatinine, which shows how my kidneys are faring as myeloma can cause kidney problems.
Hemoglobin, for anemia, as it is a symptom common to MM patients and present in me from the get-go.
Date M-spike g/dL Creatinine mg/dL Hemoglobin g/dL
6-1-19 1.4 better .94 normal 10.8 lowish
9-20-19. 1.7 🤔 1.00 normal 11.9 😊
3-16-20 1.8 okish .86 normal 10.0 low
6-1-20 1.7 1.19 normal 10.9 ok
9-21-20 1.6 .90 normal 10.3 lowish
12-14-20 1.6 1.08 normal 10.0 low
2-8-21 1.5 1.15 normal 10.7 lowish
11-22-21 1.9 1.14 normal 9.4 low
6-21-22 1.6 1.07 normal 8.9 low
7-19-22 2.1 🙄 1.04 normal 9.0 low
Pretty stable! Just feel wonky. Neuropathy, debilitating fatigue, and the dreaded shortness of breath.
Acyclovir 400mg twice a day
Magnesium and Zinc, 400mg & 15mg twice daily
Eliquis 5mg twice a day
Calcium + D3, 400mg & 500 IU twice a day
Fish Oil Omega-3, 1000mg twice a day
B6, Folic Acid, B12, 2mg & 800mcg & 1000mcg twice a day