Thursday, August 25, 2011

High Calcium

It's not extremely high, just 10.5 mg/dL, where the reference range is 8.9 to 10.1. But it could be an indication that the myeloma is etching holes in some bones somewhere. I don't even like to think about that. On the other hand, my calcium level does seem to bounce around a lot these days. It was 9.4 in May, 10.4 in June, then 10.0, and finally 9.8 in late July. Doctor LH says watch and wait, and hydrate, which can affect the calcium level especially. It certainly could be a hydration issue this time - I felt thirsty last night and probably didn't drink enough.

That "watching and waiting" business is one of the hardest parts of myeloma, because I do know of people whose bones broke while they were waiting. Fortunately, though, I do get new tests every 28 days, so I'm watching pretty closely, and if calcium stays high Dr L will probably do something to get a closer look.

Pomalidomide Study:

Otherwise, at the end of the 45th 28-day cycle of the study drug pomalidomide, IgG is up about 12% from last month. This is not good, but it's been there before, several times. Likewise M-spike, which follows IgG, is up 10% to 1.1 g/dL. Light chains are unchanged, and creatinine (kidney marker) is down, which is good. Dr LH pronounced the myeloma "stable."


The doctors have prescribed Bactrim, a sulfa-based antibiotic, to be taken prophylactically to ward off opportunistic pneumonias. I've been stalling, reluctant to take it, but decided to try it a few weeks ago. After about a week of it, I had constipation, pain in my abdomen (probably from the constipation), and fatigue. These symptoms are not highly unusual and could have appeared anyway, of course, but they resolved when I stopped the Bactrim. Our pharmacist said that Bactrim has produced these symptoms in other people too. So I stopped taking it again, and will discuss it with Dr L on the next visit.

Vitamin K2:

I take 30 mg of Vitamin K2 (menatetrenone) every day, along with 5000 mg of Vitamin D3, to help protect and rebuild bone. Dr LH seemed concerned about the amount of Vitamin K2, because too much Vitamin K can theoretically affect blood clotting. I may be misrepresenting her concern here, but she ordered two more tests: INR, and Vitamin D level.

INR was 1.1, where the reference range is 0.8 to 1.2. This is OK, and certainly my blood is not too apt to clot. I don't have the Vitamin D level yet, but expect it to be fine.

AAA Screening:

Once in a lifetime a man who has ever smoked should be screened for an Abdominal Aortic Aneurysm. I did smoke for a couple of years, almost 50 years ago. I got smarter later, but the USPSTF (who?) recommends one ultrasonic exam of the abdominal aorta in such stupid men, sometime between the ages of 65 and 75. It's a simple ultrasound between the bottom of the sternum and the navel.

When it was finished, I told the technician that I wouldn't ask for a result, but asked if it was safe to drive home. She grinned and said "well, I'm letting you go, let's leave it at that." So I'm sure I passed, because a ruptured aortic aneurism has a very low survival rate and she would have kept me if she had seen a risk.

Some Current Test Results:

Test    Jun 02    Jun 30    Jul 28    Aug 25     Remarks
M-spike g/dL 1.1 1.0 1.0 1.1 Best tumor measure?
IgG mg/dL 1110 1070 1030 1150 Best tumor measure?
Lambda mg/dL 2.52 1.74 2.21 2.25 L Free light chains
Calcium mg/dL 10.4 10.0 9.8 10.5 High
Creatinine mg/dL 1.2 1.3 1.3 1.1 Kidney, OK
HGB g/dL 15.2 14.8 15.1 14.7 Hemoglobin, OK
RBC M/uL 4.13 4.28 4.17 4.08 Red cells, low
WBC K/uL 4.9 3.6 5.1 3.8 White cells, low
ANC K/uL 2.40 1.17 1.90 1.40 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.

Leftover turkey and other good stuff:

Friday, August 5, 2011

Carfilzomib Access

Carfilzomib is a new proteasome-inhibitor drug similar to Velcade, but with fewer side effects. In addition, some patients for whom Velcade no longer works have responded to Carfilzomib in trials.

Until now it has only been available in limited trials, but a new trial has been announced which will make it much more widely available. Here is the link: The MMRF.

To be eligible, patients must have progressive disease, had at least four prior therapies, and be refractory to at least one of those. Please check the website (MMRF link above) for a better definition of eligibility and exclusion criteria. 40 different clinical centers throughout the country are enrolling for the study, so that patients can have access locally.

The drug will be provided at no cost until it become commercially available, which could be as soon as the first half of 2012.

If you've tried everything else, here is one more good therapy.