Tuesday, September 27, 2011

Stacy Died

Stacy was the wonderful young mother of two small girls and as warm, caring, and upbeat a person as I've ever known. She was struck down today by myeloma.

I feel so damn ANGRY at this disease. So helpless. I hate it! My own ride with myeloma has been easy by comparison, but now I've personally known thirteen people, shaken their hands and spoken face-to-face, people like Stacy, who have gone down before this merciless killer. All of them died too early, and Stacy's death is a particular tragedy.

Some people say that new treatments for myeloma might eventually turn it from a uniformly fatal disease into a chronic one. That's a great goal, but we're not there yet, not when a young wife and mother of two cannot be saved by the best medical care on earth. There is a lot of work to do.

Stacy, we love you and we commend you to the hands of God. We will most certainly miss you here.

Stacy, second from left, with her mother and two daughters:

Thursday, September 22, 2011

Still Stable After Cycle 46

I'm a very fortunate myelomiac, I know that. My numbers go up slightly, and then they go down again. This time they're down a bit after the 46th 28-day cycle of the investigational drug pomalidomide. I've never been injured by the myeloma and I can still run, and in fact we just finished our 55th marathon since diagnosis. That's very lucky indeed, and I'm so grateful to the professionals at Mayo Clinic, and to Celgene, the makers of pomalidomide, and to my two sweeties who care for me, and all others who make the hope come true. Life is very good.

Serum Cancer Markers:

My myeloma is IgG Lambda, a very common type. So far, the tumor burden seems to be quantifiable by measuring its surrogates, the IgG protein level and the M-spike. IgG is down from 1150 mg/dL last month to 1020 this time. Accordingly, M-spike is down from 1.1 to 1.0 g/dL. Light chains are basically unchanged. Liver enzymes are up a bit, but that could be from running a marathon four days ago - they're still within the reference range.


Last month my calcium was 10.5 mg/dL, which is significantly above the top of the reference range. Doctor LH recommended that I cut my daily Vitamin D3 supplementation in half, to 2500 IU, and I did. This month calcium was 10.0 mg/dL, just below the top of the reference range. Calcium in the blood has varied quite a lot from month to month, so we can't say for sure that the Vitamin D3 reduction made any difference, but it might have. There is such a thing as too much Vitamin D, although 5000 IU/day is far below the levels generally thought to be harmful. That threshhold might change, however, when the supplement is taken for years, as I have done.

Too much calcium in the blood can be harmful in itself, playing a part in atherosclerosis, but for a myelomiac it can also be a signal of bone loss, indicating that the myeloma is active in the marrow of some bone or bones. I'm glad that it went down, and for now I'll stay on the reduced amount of Vitamin D3.

Even though the calcium level went down, though, it's still on the high side of normal. Considering that it's been 18 months since the last skeletal survey, Dr RH thought it would be reasonable to have one, and scheduled it as part of next month's tests. That's a proactive approach that I appreciate. I did have a clear PET scan six months ago, but myeloma can be very sneaky.

Some Current Test Results:

Test    Jun 30    Jul 28    Aug 25    Sep 22     Remarks
M-spike g/dL 1.0 1.0 1.1 1.0 \ Tumor marker
IgG mg/dL 1070 1030 1150 1020 / Tumor marker
Lambda mg/dL 1.74 2.21 2.25 2.49 L Free light chains
Calcium mg/dL 10.0 9.8 10.5 10.0 OK
Creatinine mg/dL 1.3 1.3 1.1 0.9 Kidney, good
HGB g/dL 14.8 15.1 14.7 14.9 Hemoglobin, OK
RBC M/uL 4.28 4.17 4.08 4.09 Red cells, low
WBC K/uL 3.6 5.1 3.8 6.2 White cells, normal
ANC K/uL 1.17 1.90 1.40 2.60 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.

Presque Isle State Park, September 18, 2011, a view of Lake Erie from along the marathon route:

Thursday, September 1, 2011

Collaboration With Team Continuum

I'm now running on behalf of Team Continuum, raising money for people living with cancer, while I pursue my goal of running a marathon in each of the 50 states. We three have a full schedule of marathons for the rest of 2011, including the New York City Marathon, the Marine Corps Marathon, and several others.

You can help. If you go to my new E-Race Cancer Facebook Page and "like" it, a donation will be made to Team Continuum by a third party. We invite you to do that - there is no cost to you.

While you are there, you are certainly also welcome to click on the Team Continuum link and make a further contribution to the cause.

Thank you!

Vitamin D3 and High Serum Calcium

At my last Mayo Clinic visit, serum calcium tested at an all-time high, 10.5 mg/dL. The reference range is 8.9 to 10.1 mg/dL, so it's significantly above normal. Why is that? (1) It could be the myeloma attacking a bone somewhere; or (2) Dr LH noticed that I take a lot of Vitamin D3 and Vitamin K2 supplements, and decided to measure INR and Vitamin D levels. INR was OK.

Vitamin D levels came back the next day, and a couple of days after that Dr LH called to discuss them:

Test Name Result   Units
25-Hydroxy D2 <4.0 ng/mL
25-Hydroxy D3 71 ng/mL
25-Hydroxy Total 71 ng/mL   Total (D2+D3) optimum level is 25-80 ng/mL

Dr LH pointed out that the Total Vitamin D is near the high end of the optimum range, and suggested that I cut my Vitamin D3 from 5000 units per day to 2500 per day, which is easy enough to do. Arguments for doing that (these are from my own research):
  • Some authorities believe that it is possible for continuously-high levels of Vitamin D to cause high serum calcium.
  • In some individuals, high levels of calcium can result in deposition of calcium in arteries, atherosclerosis.
  • There is really not enough research to determine the safe amount of supplementation.
Arguments against reducing Vitamin D supplementation:
  • According to the Vitamin D Council, toxicity begins at about 200 ng/mL and higher. They suggest an upper limit of 100. Other authorities seem to agree, though research on humans is lacking and individual responses could vary widely.
  • The purpose of the high Vitamin D3 intake, along with Vitamin K2, is to combat bone loss. In a one-year test this seemed to be effective, with two density scans a year apart showing no measurable difference in density. It's just one short test, but I'm reluctant to make a change that might reduce the effectiveness of this treatment.
So what to do? My serum calcium levels have varied widely in recent months. Below is a chart of recent measurements.

Possibilities: cut the Vitamin D3 supplement in half or leave it the same for the current cycle, and, either way, the serum calcium might stay high or it might go down. But if I cut the D3 in half and calcium remains high, then we should worry about a myeloma hot spot in a bone somewhere. That's the worst case scenario here, so let's check for it.

Blood Calcium Chart