A brief overview
In May 2015, I was diagnosed at Herrick Hospital, Berkeley, with multiple myeloma, an incurable but treatable cancer. I began chemotherapy at once. Seven months later, I went for second opinion at University of California, San Francisco. They determined that I do not (and did not) have multiple myeloma, but a precancerous condition called "smoldering myeloma." They said I should never have had seven months of chemotherapy and should stop at once. They stopped the chemo, and said to return every three months for a blood test. At each testing time, there is roughly a 3% chance that there will be cancer.
A more detailed overview
In May 2015, I was told, following various tests at Herrick/Summit cancer center in Berkeley, that I suffered from multiple myeloma, an incurable (but treatable) bone marrow cancer. I began six months of fairly intensive chemotherapy (daily oral doses of Thalidomide (Revlimid) and twice weekly injections of Velcade). I described the process in detail, and gave regular updates in the column to the right.
And then . . . for a variety of reasons which I may mention later, on Nov. 17, I went to the University of California San Francisco's Diller Family Cancer Center for their comprehensive "second opinion" process.
Following extensive blood tests, and a 90 minute meeting with two of their myeloma-specialist physicians, it seems to be a whole new ball game.
1. UCSF says that I do not have multiple myeloma. What I have is a pre-cancerous condition called "smoldering myeloma," much less threatening, which could grow into multiple myeloma, but often doesn't.
2. UCSF says that I should never have started chemotherapy, and that I should stop at once (and so I have).
3. UCSF says that was improper for me to have full-body X-rays to look for bone lesions, since X-rays cannot pick up tiny micro-lesions. What should have been done is a PT "Pet" scan. This will be done soon. (There is nothing to suggest I do have micro-lesions, but it is important to be sure.)
4. UCSF says that there are five things that they watch closely, M-spike and "CRAB."
a. M-spike relates to percent of not-good plasma cells. Over 60% is bad (multiple myeloma). Mine is 30% (smoldering).
b. C is calcium, R is renal, A is anemia, and B is bones. My first three are normal; the "B" will be learned from the PT scan.
5. Average life expectancy for this condition at my age is around 10 years, making it more likely that something else will get me before this does.
6. So I will return to UCSF for blood test and a consultation monthly for a while, then probably less often, unless the numbers become troublesome . . . at which time, they have nine different modalities that they can and do offer patients, plus combinations of some of them. I'm putting a list of those nine at the bottom of this section. #9 is especially interesting and exciting.
So the bottom line (for now) is that I have 'resigned' from Herrick/Summit in Berkeley and put myself in the care of UCSF. It feels right, and I feel good -- and expect to feel better still as the results of all those months of chemo wear off.
The nine modalities in use at UC San Francisco:
1 proteasome inhibitors (Velcade, Kyprolis)
2 Imids (thalidomide, Revlimid, Pomalidomide)
3 HDAC inhibitors (Panobinostat)
4 Alkylasors (Melphjalan, Cyclophosphamide)
5 Steroids (Dexamethasone, Prednisone)
6 Transplant (but not relevant for me; insurance won’t pay at my age)
7 Antaracyclines (doxyl/dekorubicin)
8 Clinical trials (some very relevant ones going on there)
9 Antibodies: The very big and extremely encouraging news in the field is that this week, the FDA approved Daratumumab, an anti-CD38 antibody, with really encouraging results for myeloma patients in a variety of clinical trials; the most exciting thing to come along in many years, perhaps ever.
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.