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.
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.
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:
|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:
- Topical emollient creams, with cocoa butter and spearmint, menthol, or even capsaicin, to stimulate nerves.
- Evening primrose oil supplement.
- "Magnesium Oil."
- L-Glutamine, up to 30 grams daily. I have it on hand, just don't find it convenient to take it.
- Pickle juice can work for cramps, maybe for neuropathy? One friend swears by it.
- Transcutaneous electrical nerve stimulation (TENS). May have a temporary benefit.
- I don't smoke, but if I did I should stop! Duh.
- Infrared heat.
- There are various gizmos and treatments advertised on the web. Buyer beware.
| ||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:
- She finished a recent marathon in a very nice time, despite having to wear a lot of clothing to keep warm.
- She thinks that my running inspires hers. As for me, I'm very proud of her.
- In answer to my question, yes, get a pneumonia shot.
- If ashwagandha didn't help in the first month, maybe in another month.
- There is a study of an oral form of Velcade.
- There is also a study of a drug currently in use for renal cancer.
- The pomalidomide trial is now open for people who have failed both Revlimid and Velcade.
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.
|Don finishing the OBX Marathon November 8|