Saturday, July 30, 2011

Stacy Needs Your Stem Cells

Stacy is a young Minnesota mother who needs an allogeneic transplant, and the doctors have not yet found a match for her.

For more information, please visit Minnesota Myeloma

Thursday, July 28, 2011


July 28, 2011

Cycle 44 of the pomalidomide trial is complete and my myeloma is still stable. IgG is down a few percent, M-spike is unchanged, and Lambda free light chains are up, but only to where they usually sit. NOT ho-hum, though - I'm always a bit nervous, because we know that the lovely ride on pomalidomide will come to an end someday. Not today though. Yay!


I mentioned to Dr RH that L-Arginine made a significant improvement in a uniquely-male problem for me. He seemed pleased, but did caution that there is some anecdotal evidence that L-Arginine can increase the frequency of cold sores (herpes simplex). Perhaps it helps the herpes virus to replicate. In the same vein, a blog reader has commented that he developed shingles (herpes zoster) while taking 2000 mg L-Arginine daily. Ouch.

Consequently, an increased risk of cold sores and shingles outbreaks may be the price of improved erectile function through L-Arginine. Cold sores might not be such a high cost, but shingles can be very painful and, in rare cases, can even result in permanent injury. Further, we myelomiacs have an unusually high risk of shingles, because our immune systems are impaired.

Nevertheless, I'm not stopping the L-Arginine, at least not until I learn the lesson the hard way. I take a daily capsule containing 500 mg L-Arginine and 250 mg L-Ornithine. However, I also take a daily tablet of L-Lysine 500 mg, which is reputed to help suppress those viruses.

Some Current Test Results:

Test    May 05    Jun 02    Jun 30    Jul 28     Remarks
M-spike g/dL 1.0 1.1 1.0 1.0 Best tumor measure?
IgG mg/dL 1130 1110 1070 1030 Best tumor measure?
Lambda mg/dL 3.07 2.52 1.74 2.21 L Free light chains
Calcium mg/dL 9.4 10.4 10.0 9.8 Normal
Creatinine mg/dL 1.1 1.2 1.3 1.3 Kidney, High
HGB g/dL 14.7 15.2 14.8 15.1 Hemoglobin, good
RBC M/uL 4.11 4.13 4.28 4.17 Red cells, low
WBC K/uL 4.6 4.9 3.6 5.1 White cells, OK
ANC K/uL 1.90 2.40 1.17 1.90 Neutrophils, OK

Creatinine is a measure of the kidneys' ability to clear waste from the blood, and has been a little high (wrong direction) for several cycles now. I don't quite know what to think about that. Drink more water I guess ...

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.

Leftovers atop greens, with sweet potatoes and beans. Mostly organic, especially the sweet spuds, greens, and beans. The red lines on the sweet potato slices are a tasty pepper sauce:

Saturday, July 23, 2011

Excellent IMF Seminar in Minneapolis

Dr. Parameswaran Hari, MD, MS, and Teresa Miceli, RN, BSN, OCN spoke to a large group at the Minneapolis Sheraton. Dr. Hari is Section Head and Clinical Director, Bone Marrow Transplantation, University of Wisconsin in Milwaukee. Teresa Miceli is a bone marrow transplant coordinator and preseneter at Mayo Clinic in Rochester, MN.

Dr. Hari:

You would be well served with Dr. Hari as your myeloma doctor. He certainly seems as knowledgable as any doctor I've met. He cruised through a lot of information, on a lot of slides, in a fairly short time:
  • My Favorite: During a coffee break, a patient asked Dr. Hari, "What can we patients do besides just following our doctor's orders?" Back on the podium, Dr. Hari departed from his prepared presentataion with with brief, unscripted lifestyle suggestions:

    1. Fitness: He recommended both weight training and aerobic exercise for people whose bones can take the stress.
    2. Nutrition: In addition, he recommended more vegetables and less red meat. Further, he mentioned that curcumin is a helpful myeloma treatment for some people and harmless otherwise, but green tea (or EGCG) should not be taken with Velcade because the green tea can rescue the myeloma cells that Velcade tries to kill.

    I've never heard such an enthusiastic endorsement of lifestyle changes from any doctor before. Every one of my doctors has wholeheartedly supported the choices that I have made, training for and running marathons, and eating the best diet we can find, but Dr. Hari proposed a similar lifestyle out of the blue.

  • He also gave a quick review of what myeloma is;
  • Some statistics about cases, including length of survival as treatments have improved;
  • Some discussion of "high risk" versus normal risk myeloma;
  • Spine repair;
  • Current therapies, including the "novel" therapies: thalidomide, Revlimid, Velcade, and others in various ombinations;
  • Transplants, including auto, allo, mini-allo, and combinations;
  • Post-transplant consolidation and maintenance;
  • Treatments which are in clinical trials including pomalidomide, catfilzomib, elotuzumab, and more;
More than once, Dr. Hari mentioned that the cure for myeloma is to hold it off long enough to die of something else, and he believes that should be the treating physician's first goal.

Nurse Miceli:

Teresa Miceli's presentation was titled "Managing Side Effects of Myeloma and Novel Agents:
  • She discussed how myeloma itself impacts quality of life;
  • Gastrointestinal side effects;
  • Myelosuppression (low blood counts);
  • DVT and other blood clots;
  • Peripheral neuropathy;
  • Renal function (drink, drink, drink);
  • Bone health; and
  • Sexual function and dysfunction.
What can we do in our battle with myeloma? Drink lots of water!

Thanks to the International Myeloma Foundation for hosting this seminar, free of charge to all.