Life is Great

June 30, 2011

Some runners don't like to run the same route over and over again, because repetition is boring. I agree, except when the route is incredibly beautiful, like a mountain trail, because genuine beauty doesn't get boring.

Test Results:

That's how I feel about the pomalidomide drug study at Mayo Clinic - I'm not bored. After the 43rd 28-day cycle, my myeloma is still stable, and that's beautiful, life is good. IgG is down a little, M-spike down a tenth, and Lambda light chains are down significantly. They go up, then they go down. I'm learning to go with the flow, which is especially easy when the flow is down, like today.

Actually, Lambda Light Chains dropped by 31%, while Kappa Chains went up a little, both going in the right direction. These are important cancer markers for some myelomiacs, and this sort of change would be good news for them. Light chains are not the best markers for my myeloma, though, so I don't know how much it means. Anyway it's certainly not bad news.

Creatinine is not a cancer marker, but is the primary kidney marker and is checked every month because myeloma can cause kidney failure. Creatinine was near the high end of the range for the second successive month. However, Dr RH explained that creatinine is a byproduct of muscle breakdown, which is happening to everyone all of the time but may be higher than normal in my case because of the running - I ran two marathons in the last 28 days, one just 12 days ago. So I won't worry unless it goes quite a bit out of range. Meanwhile, more water would probably be good. Kidneys like water. Alas, Dr RH didn't think that beer would do quite as well.

Supplements:

For this cycle I dropped two supplements: (1) Marrow Plus, Chinese herbs for bone marrow; and (2) Genistein, a supplement which may have an anti-tumor benefit but also some side effects. I also added a supplement containing L-Arginine 500mg and L-Ornithine 250 mg. Results:

• Marrow Plus: The neutrophil count shown below was unintentionally ordered and was performed this morning at 6:00 am, reading 1.17 K/uL. It's always low in the morning. The "real" (intended) count was done yesterday afternoon, reading 1.90 K/ul. Both of those numbers are above the cutoff for the study, and my conclusion is that I don't need the rather expensive supplement.
• Genistein: Since the tumor markers all went down, I assume that this supplement can also be dropped from the regimen. If it ever did any good, it probably isn't helping now.
• L-Arginine & L-Ornithine: These are closely-related amino acids with a reputation for improving blood flow. Listen up men: It works! "Blood flow" is objectively and subjectively improved. Maybe it helped to drop the Genistein, but I think it's the added L-Arginine. I might create another post about that if I get up enough nerve.

Some Current Test Results:

Test		Apr 07		May 05		Jun 02		Jun 30		Remarks
M-spike g/dL		1.0		1.0		1.1		1.0		Best tumor measure?
IgG mg/dL		1080		1130		1110		1070		Best tumor measure?
L FLC mg/dL		2.08		3.07		2.52		1.74		L Free light chains
Calcium mg/dL		9.9		9.4		10.4		10.0		High
Creatinine mg/dL		1.2		1.1		1.2		1.3		Kidney, OK
HGB g/dL		15.5		14.7		15.2		14.8		Hemoglobin, good
RBC M/uL		4.27		4.11		4.13		4.28		Red cells, low
WBC K/uL		4.9		4.6		4.9		3.6		White cells, low
ANC K/uL		1.90		1.90		2.40		1.17		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.

Hot and humid today, 98 at our house. This photo from April reminds us of cooler days:

IMF Regional Workshop July 23

International Myeloma Foundation (IMF)
Regional Community Workshop

Saturday, July 23, 2011
8:30 am - 3:00 pm

Sheraton Minneapolis
12201 Ridgedale Drive, Minnetonka, MN 55305

Brochure:

The Twin Cities Multiple Myeloma Support Group invites survivors (patients), families, caregivers, and friends to attend. It is free of charge, but please register with the IMF: Call 800/452-CURE (2873), or email theIMF@myeloma.org or Register on-line HERE.

From the IMF web site: "Regional Community Workshops are half-day meetings and are designed to provide much of the same information as that of a Patient & Family Seminar but in a condensed form. These meetings are held in smaller cities and allow the IMF to expand the reach of its programs to a wider audience. The faculty consists of local myeloma specialists, a nurse, and a speaker on supportive care issues. The IMF works closely with the local support groups to promote these meetings and attendance generally ranges from 50-75 attendees."

Faculty: The primary speaker will be Dr. Parameswaran Hari, MD, MRCP, MS, Clinical Director of the Adult Bone Marrow Transplant Program and Associate Professor of Medicine in the Division of Hematology and Oncology, Wisconsin College of Medicine. Also confirmed is Teresa Miceli, RN, BSN, from Mayo Clinic in Rochester, very knowledgable about myeloma and a blessing to her patients.

If the travel isn't too daunting, I can't recommend this event highly enough. You will undoubtedly:

• Meet other survivors;
• Meet Teresa Miceli and the doctors;
• Learn about myeloma and its treatment; and especially
• Learn about recent advances.

Personally, I would skip an important marathon to attend this workshop.

Don

Stable Again

June 2, 2011

I'm still on the pomalidomide drug study at Mayo Clinic, and the cancer markers seem stable after the 42nd 28-day cycle. IgG is down a little, M-spike up a little, and Lambda light chains are down. Par for the course. I take just 2 mg of that miracle molecule every night, along with some aspirin and an anti-viral to ward off shingles. I've enjoyed well over three years of a high-quality lifestyle, including 25 marathons, since starting pomalidomide.

Other test results are not quite as comforting though. For some reason calcium is a little high, and two different kidney markers are at the top edge of the reference range. I probably haven't been drinking enough water. Those tests are done every month, and we'll see how they look next month. Dr. RH didn't even mention them, so he probably wasn't concerned.

TSH is a thyroid marker which goes high when thyroid output goes low, and TSH was a little high, for the first time in years. It does bounce around some, and I'll get another reading in three months. I take a couple of supplements for thyroid, but haven't changed that.

Some Current Test Results:

Test		Mar 09		Apr 07		May 05		Jun 02		Remarks
M-spike g/dL		1.0		1.0		1.0		1.1		Best tumor measure?
IgG mg/dL		1050		1080		1130		1110		Best tumor measure?
L FLC mg/dL		2.50		2.08		3.07		2.52		L Free light chains
Calcium mg/dL		9.6		9.9		9.4		10.4		High
Creatinine mg/dL		1.0		1.2		1.1		1.2		Kidney, OK
HGB g/dL		15.2		15.5		14.7		15.2		Hemoglobin, good
RBC M/uL		4.40		4.27		4.11		4.13		Red cells, low
WBC K/uL		5.3		4.9		4.6		4.9		White cells, OK
ANC K/uL		1.61		1.90		1.90		2.40		Neutrophils, normal!

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.

Pot roast with lots of onions, olives, potatoes, sweet potatoes, and interesting cheese.