A brief overview
December 4, 2019
This evening I have the biopsy results. That which was in remission for five years is now diagnosed as full-fledged multiple myeloma (bone marrow cancer). As the oncologist, Dr. Wong put it, it is incurable but usually responds well to treatment.
So treatment will begin as soon as insurance issues are resolved. (The cost of the 3 basic drugs, without insurance, is $43,000 a month!). Treatment consists (at the start) of a weekly IV of the new and promising Swedish immunotherapy drug, daratumumab (a 7 or 8 hour ‘drip’); a daily chemo pill (thalidomide) and a steroid (dexamethasone). Side effects are usually not so bad. The goal and hope is to reduce the three key myeloma markers: percentage of plasma cells; light chains; and paraprotein. This will be monitored closely.
Prognosis: the average life span for people when first diagnosed (stage 1) is 5.2 years. If the treatment does not work well and one moves to stage 2, then 3.7 years. Further decline to stage 3 suggests 2.3 years. And of course these are averages. When one starts out on this path at age 81.7, the odds are still that one will die of something else other than myeloma.
March 7, 2018
My paraprotein level (the ‘m-spike), main marker for presence of multiple myeloma, is slightly down for the second consecutive time (was 2.1, is 1.9), after reaching a potentially troublesome level last fall. This is good.
The full body CT scan I had in December (in lieu of the bone marrow biopsy that I won’t do unless it can be done under sedation, which UCSF doesn’t do) found no lesions, which is good. Turns out that “smouldering” myeloma really does smoulder. The CT scan shows 4 or 5 places that actually have a faint glow, signaling there is unwanted activity going on (hip bone, one arm bone, etc.) but the level is very low and nothing needs to be done, other than minor fretting.
So that’s it till the next lab tests in June.
February 7, 2018
PET scan finds no evidence of lesions. Good news. Now reverting to blood test every three months, next in early March, to see what the paraprotein (M-spike) is doing.
December 1, 2017
The key scores fluctuate. The oncologist says we need more information. So the next step will be a PET scan early next year, which would show if there are lesions anywhere in the body. If yes, then treatment will change. If no, I stay on the every-two-or-three month blood test regimen.
September 3, 2017
And now after 12 weeks they are creeping down again, which is good. So now I am back on the 3-month rota, with the next tests at the end of November.
July 18, 2017
The oncologist points out that my two most important scores (paraprotein and kappa light chain) are “creeping upward.” Not enough to be alarmed, but enough to be concerned. So my time between tests is reduced from 12 weeks to 6. If the ‘creep’ continues after 6 weeks, then it will be time for a bone marrow biopsy. (The first one I had, 3 yeaers ago, was by far the worst pain I’ve ever suffered; six minutes of agony. So for the next one, I asked for, and got, full sedation. Unfortunately, UCSF doesn’t do sedation for this procedure, which will be a challenge. I may need to go elsewhere, since I won’t do it any other way.) More will be known on September 1st.
January 23, 2017
The every-three-months multiple myeloma blood test is satisfactory; no changes; return in three months. The kidney test numbers are also good--the tiny cancer (2.3 millimeters) remains tiny; return in six months. But the kidney "cat scan" inadvertently also detected coronary artery calcification, which needs to be looked at. Feeling fine, but that matter is potentially troublesome.
July 15, 2016
Kidney test numbers good. Return in January.
June 5, 2016
Blood test numbers look good. Return in September.
March 10, 2016
Following lab tests yesterday, UCSF has put me on a three-month rota: no more medicine, and blood tests every 3 months to see how things are going. This is encouraging.
February 22, 2016
Meeting with Dr. Kirsten Greene at UCSF, one of their kidney cancer specialists. Turns out that the tiny black mass inside a kidney cyst, discovered by CT scan, is probably cancerous (75% chance), but also extremely unlikely to grow (1% to 5% chance). So it will be checked every 3 to 6 months.
If the cyst does grow, it can be destroyed with a hot or cold needle (tiny incision in back), or removed laparoscopically (robotically, also through tiny incision in back).
The kidney issue has nothing whatever to do with the myeloma situation.
February 13, 2016
One thing about getting a full-body PT Scan is that it provides an extremely detailed look at everything from guzzle to zatch – or scalp to toes – much of which would never be looked at in the normal course of ordinary testing – and things inevitably will be found.
• There were no bone lesions-- the main thing being looked for. This is very good.
• No problems with liver, spleen, pancreas, adrenal glands, vascalature, GI tract.
• discovery of a small hernia—something better dealt with sooner than later, because it grows—so I’m going in for the outpatient procedure in 2 weeks. (April: all done; all is well.)
• Cystic in left kidney, which needs an expert to look at.
Meanwhile, I feel absolutely fine. Doing chemo for 6 months and then stopping is a surefire way to feel better.
January 23, 2016
I'm in a routine pattern now, having a blood test every six weeks. As long as there are no significant changes, then I am considered to have the pre-cancerous condition called "smoldering myeloma," which may or may not become cancerous. But for now, all is well. No more chemotherapy, and feeling so much better as a result. If the next few six-week checkups are also good, I'll go to an every-three-months regimen.