Today, though, Mayo Clinic inadvertently scheduled a CBC with differential for this morning, with a result of 910/uL, which is below the limit. According to the study protocol, that means I would have to go off the Pomalyst because, unfortunately, only the most-recent CBC can be used. Therefore yesterday afternoon's CBC, with its good result of 2000/uL, didn't count any more. That's a little dopey, but rules are rules.
This problem was easily solved, however. This same afternoon, yet another blood draw at the local clinic resulted in a satisfactory neutrophil count of 1600/uL, so my partcipation in the study is back on schedule. I had a capsule for tonight anyway, the last night of the current cycle, so we're all set for 29 more days.
Pomalyst Trial:
Today completes my 64nd 28-day cycle of the study of Pomalyst and my myeloma is still stable, as it has been for almost five years. IgG is exactly the same as last month, at 1140 mg/dL, while M-Spike dropped from 1.1 to 1.0 g/dL, though that drop may not be significant. Lambda light chains are up a bit but Kappa chains are up too, and the ratio didn't change much. Stable. Hoist a pint for Don.
We met with Mayo's doctor TR today, another delightful person. I asked her what to believe - if IgG stays constant and M-spike drops by about 10%, which is correct? She pondered that a bit and said "both." Now that I have had time to reflect, I guess it's possible that "bad" IgG really did drop, as shown by M-spike, and "good" IgG went up an equal amount. However, I suppose it's more likely that the difference is just due to measurement tolerances. Either way, "both" is the right answer.
Other Results:
Creatinine clearance is a rough measure of kidney function - higher creatinine means less kidney function. Today's creatinine measurement was 1.5 mg/dL, the highest I have seen in more than nine years. However, creatinine itself is a product of muscle breakdown, and if muscles have been heavily challenged then creatinine will be inherently higher.
I believe that today's result was an anomaly, for two reasons:
- (1) Two days ago I ran 18 miles at a pace faster than my marathon pace, and then shoveled snow for nearly three more hours. I was very tired and every muscle ached. Furthermore, just yesterday, I shoveled for another two hours, with more ache; and
- (2) I probably didn't drink enough water either day, especially after the 18-mile run, and kidneys need plenty of water to function correctly.
Most-Recent Test Results:
Test | Nov 15 | Dec 13 | Jan 10 | Feb 07 | Remarks | |||||
M-spike g/dL | 1.2 | 1.1 | 1.1 | 1.0 | \ Tumor marker down | |||||
IgG mg/dL | 1270 | 1250 | 1140 | 1140 | / Tumor marker same | |||||
Lambda mg/dL | 2.92 | 3.25 | 2.56 | 3.09 | L free light chains | |||||
Calcium mg/dL | 9.6 | 9.3 | 9.6 | 9.6 | OK | |||||
Creatinine mg/dL | 1.2 | 1.3 | 1.2 | 1.5 | Kidney, high | |||||
HGB g/dL | 14.7 | 15.1 | 15.3 | 14.4 | Hemoglobin, OK | |||||
RBC M/uL | 4.13 | 4.31 | 4.41 | 4.10 | Red cells low | |||||
WBC K/uL | 5.5 | 4.4 | 4.1 | 4.9 | White cells, OK | |||||
ANC K/uL | 3.00 | 2.10 | 1.50 | 1.60 | Neutrophils, Low |
Related Links:
My Myeloma | A discussion of my myeloma, not very technical. | |
My Treatment History | Not technical. | |
My Test Charts | Graphic displays of several key test results over time. | |
My Test Result Table | Somewhat technical. Best with a wide browser window. | |
My Supplement Regimen | With links to where I buy them. |
Small changes in M-spike are statistically meaningless. The measurement of an M-spike is INDIRECT. There is a measurement of total protein, which can absolutely vary. This amount is then divided among the relative sizes of peaks in the electrophoretic profile.
ReplyDeleteAn interesting point! I don't even keep track of total protein, but was able to quickly go back six cycles and found it ranging from 6.8 to 7.9 g/dL. Further, although the correlation wasn't perfect, the highest M-spike did occur with the highest total protein, and the lowest M-spike with the lowest total protein. Seems like it should be possible, given a history of both readings, to report a "normalized" M-spike as an additional value.
DeleteThat's probably taking electrophoresis a little beyond its capability.
Thank you!
Hi Don, way to go! I had a similar experience to yours. When I started the carfilzomib trial at the NIH in May, 2012, my neutrophils dropped to only 300. I had to suspend treatment for several days and I had to self inject Neupogen. The latter worked and my neutrophils never again went below 1000 as the disease was chopped away. Last month, they were 5000 and all other blood counts are normal and my marrow is clean. I can envisage the day when carfilzomib and pomalidomide are combined. That might be a potent combo for a clinical trial somewhere. Regards. Terry L.
ReplyDeleteThanks Terry, and congratulations to you!
DeleteIf I recall correctly, there was a trial of carfilzomib and pomalidomide that resulted in 100% response in newly-diagnosed patients, with a strong fraction of those achieving a complete response like yours. Two really good drugs.