Mayo Clinic Cycle 22, Still Stable

I've had trouble sitting down to write this post. The Mayo visit was November 12, almost two weeks ago. Plenty to say, but everything else intervenes, and I STILL don't have all the leaves picked up off the grass.

Test Results:

At the end of Cycle 22 of the Mayo Clinic trial of pomalidomide with dexamethasone (DEX), no change in M-spike. Still 0.9 g/dL, which isn't bad. In fact the lab said it was 0.86 (verbal), but they round up for the written report because the test really isn't accurate enough to support two digits past the decimal. M-spike has hovered between 1.1 and 0.8 g/dL since June of 2008. IgG is up a little, but Lambda free light chains are down a little and the K/L ratio is up (good). Stable!

Calcium is back where it should be, and none of the other tests raise any eyebrows. Enough about test results.

Ashwagandha:

I've taken 225 mg of Sensoril brand ashwagandha every evening for the entire cycle. With no discernible change in test results, it's hard to say that the ashwaghanda has done anything, except help with a good night's sleep. Maybe I should double the dose. Instead, though, I'm now taking the pomalidomide at night, with the ashwagandha, rather than in the morning. That may make a difference, maybe not.

Peripheral Neuropathy:

Some months ago, after 15 cycles of pomalidomide, I noticed some numbness in the soles of my feet and a little tingling in my thumbs. No pain. I immediately did some research and started a new treatment for it, and the neuropathy stabilized. It hasn't changed much now in several months. I do not know whether my treatment is helping to stabilize it, because I haven't stopped the treatment to find out, but for what it's worth, here it is:

Daily dosage:
A good daily vitamin  
A good multi-B vitamin  
Vitamin B6 100  mg
Vitamin B12 sublingual 1000 mcg
Vitamin E 200 mg
Alpha Lipoic Acid   1200 mg
L-Carnitine 1000 mg
Bromelain 1000 mg
Flax Seed Oil 2000 mg
Curcumin 500 mg

Where it's necessary to take more than one capsule or tablet, I divide the dosage in two, taking half with breakfast and half with dinner.

I also believe in keeping the "peripherals" warm, because healing works far better when tissue is at body temperature. I wear wool socks most of the time, even in bed, and cotton gloves in bed. In addition, we eat very well (nothing that doesn't contribute to health), and get good exercise.

Things that are recommended (somewhere) but which I do not yet do: 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 Best with a wide browser window. Very "technical."

Some current test results:

Test Aug 20   Sep 17   Oct 15   Nov 12   Remarks
M-spike g/dL 0.8 0.9 0.9 0.9 Best tumor measure
IgG mg/dL 979 1070 1020 1100 Variation is normal
L FLC mg/dL 2.07 2.54 2.68 2.61 L Free light chains
Calcium mg/dL 9.7 10.0 10.3 9.8 Below 10.2 is best
Creat mg/dL 1.1 1.0 1.0 1.0 Kidney, lower is better
HGB g/dL 14.8 14.5 15.0 14.4 Hemoglobin, normal
RBC M/uL 4.13 4.01 4.21 4.00 Red cell count, low
WBC K/uL 3.9 3.7 4.2 3.9 White cells, normal

Discussion with Dr. L: American Society of Hematology (ASH):

Apparently it is unusual for a myelomiac to be able to run marathons. Thus far I have been lucky enough to avoid broken bones, and I've done eight marathons this year. The International Myeloma Foundation (IMF) has invited me to attend the annual ASH Conference, December 4-7, as an advocate for new treatments like pomalidomide. I will try to blog about it in real time, and will certainly report on it afterward.