Thursday, March 7, 2013

Five Years on Pomalyst (Pomalidomide)

"Pomalyst" is a little easier to say and write than "pomalidomide," so I prefer it. Today was the end of the 65th 28-day cycle of the trial, and my myeloma is still stable. IgG and M-spike are up somewhat, but within the range of recent results and I believe this is a normal fluctuation. Further, and very important, a five-year-anniversary PET scan shows no lesions, not in the bones or anywhere else. In my book, as long as kidney function, blood counts, and calcium are normal, the PET scan is the best measure of the immediate level of actual injury from my myeloma.

View from our front door two days ago
IgG is actually up from 1140 to 1290 mg/dL, and M-spike from 1.0 to 1.1. However, lambda light chains have declined slightly from 3.09 to 2.84 mg/dL, and if that means anything at all, it is movement in the good direction. I pronounce the myeloma stable after five years. Hoist a pint for Don and Pomalyst.

Other Results:

Creatinine was back within the normal range today at 1.2 mg/dL, giving credence to my non-medical theory that the reading of 1.5 last month was not real, but due to muscle breakdown from a very unusual amount of physical work preceding the test (run 18 miles, shovel snow for 3 hours). Dr LH seemed a little skeptical at first, but seemed to agree that the theory is a possibility.

Most-Recent Test Results:

Test    Dec 13    Jan 10    Feb 07    Mar 07     Remarks
M-spike g/dL 1.1 1.1 1.0 1.1 \ Tumor marker up
IgG mg/dL 1250 1140 1140 1290 / Tumor marker up
Lambda mg/dL 3.25 2.56 3.09 2.84 L free light chains
Calcium mg/dL 9.3 9.6 9.6 9.4 OK
Creatinine mg/dL 1.3 1.2 1.5 1.2 Kidney, OK
HGB g/dL 15.1 15.3 14.9 14.4 Hemoglobin, OK
RBC M/uL 4.31 4.41 4.10 4.26 Red cells, low
WBC K/uL 4.4 4.1 4.2 4.7 White cells, OK
ANC K/uL 2.10 1.50 1.60 2.50 Neutrophils, dandy

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.

3 comments:

  1. Hi Don, I just received word today that I have been approved for Pomalysts. I get instructions from my oncologist on Friday. Apparently I will be on 1.0 mg, twice a day for 21 days on, 7 days off. I will also get a weekly infusion of dex. I am looking at your blood work up posted on your blog. Because I have been through two stem cell transplants, I will never have what is considered normal levels of hemoglobin. My red counts is at 3.0, white at 6.2, hemoglobin at 11.3, and my Lambda FLC at 5.83. As I read your post, I am looking forward putting an end to the damaging protein that has brought a lot of neuropathy and damage to my autonomic nerve system. I would like to possibly speak to you about your experience with Pomalysts. [My email address is Richard.klinge@gmail.com. ; blog Tin Man of Wenatchee]. Contact me and we can exchange phone numbers. Thanks.
    Rick Klinge

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  2. Hi Don,

    Came across this blog on search engine. Very inspiring and motivating. I wish you the world of health all the way from "sunny" Scotland

    David

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    1. Thanks David,
      My sweetie and I have been to Scotland, early in our marriage, and loved it. We have pictures! Now we're trying to figure out how to get to Edinburgh for that marathon. Probably not this year though.
      Don

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