Wednesday, March 23, 2011

Not So Fast, Buster

In the last post I celebrated three years' stable disease in the pomalidomide drug study, and especially the disappearance of the bone lesions revealed by a PET scan three years ago. Yay!

But oops. The very last sentences of the very last-received test result (the new PET scan) say: "Significant incidental findings on the low-dose unehnanced CT fusion images. Coronary and vascular calcification. Bilateral renal calculi."

What does this mean? I'm definitely not a radiologist, but I see two issues, neither related to myeloma:
  • Calcification (hardening) of blood vessels in the heart and elsewhere; and
  • Kidney stones.
Kidney Stones:

Dealing with the kidneys first, I took a good look at my calcium intake and found that I was getting about twice the recommend 1200 mg of calcium daily. I took 1200 in supplements, and most days got another 1200 or so from food, mostly dairy products. Kidney stones can cause infection, and of course the severe knife-in-the-gut pain that strikes if a stone enters the urinary tract, so they are a concern.

I stopped the calcium supplements, at least for now, except for one 300-mg tablet in the evening if the day's intake from food is below 1200 mg. That should help the kidneys, though I can only hope that it doesn't impact bone strength. Even more important is water intake, and I don't drink much - getting water mostly from coffee and fruit. I need to find a way to make increased water intake a normal part of my day. I'll start with one 16-oz glass of ice water at the desk every morning and afternoon, see how that goes. If I can make it work, that will be a big improvement.

Coronary and Vascular Calcification:

That's athersclerosis. Yikes! What an awful-sounding word, even in print. How can this happen to a dedicated, competitive runner who eats as well as I do? A PET scan three years ago noted "scattered mild calcifications," but the qualifiers "scattered" and "mild" are not found in this month's scan, hence the concern. The images were interpreted by different radiologists, so it's hard to know the amount of change, but the second radiologist was looking at the notes from the previous scan when he made his new notes. We've heard that the cure for myeloma is to live long enough to die of something else, but heart disease is a quick way to get there and I'm not in that much of a hurry. I'd prefer they would come out even.

Perhaps the reduction in calcium intake will help - the literature I've found seems to be mixed. One article suggested that calcium supplements may increase the risk of athersclerosis while normal amounts of calcium from food may not. But more can be done.

I now have at least four independent risk factors for serious heart disease:
  • Age of 70;
  • Family history - my paternal grandfather died of heart disease, and my father has heart disease;
  • Chronically low HDL; and
  • Now, diagnosed "coronary and vascular calcification." Is that a risk, or actual disease?
I can't fix the first two, but I may be able to do something about HDL, and thereby calcification as well. Since 1992 my HDL has wobbled between 26 and 42, most recently 36, where a desirable HDL is 60 or more g/dL. Total cholesterol is fine, at 154 g/dL, but HDL proteins are the blood-vessel scavengers capable of undoing damage done by LDL. Three years ago my HDL was 42, but since then dexamethasone (DEX) has destroyed some of my muscle tissue, which hasn't returned since discontinuing DEX. In its place, or rather in a different place, my body has accumulated an equal weight of excess fat, especially around my belly. According to a Mayo Clinic article, this belly fat may significantly degrade HDL.

In past years I've tried and given up on statins, garlic, green tea, and niacin, none of which raised HDL and all of which were either unpleasant or had unwanted side effects. I do know how to lose weight, though, and the side effects are quite positive: Better body image, better overall health, faster as a runner, and hopefully, improved HDL. I'm not clinically overweight by any means, with a BMI of 22.1, but my body is now out of proportion, with a waist of 35 inches (89 cm) compared with a height of 70 inches (178 cm). I'm definitely not "trim" any more. Therefore, I've started back on the Weight Watchers program, keeping a journal of what I eat and making the best choices. It's not easy but it works; the weight will come off, slowly and sensibly. 154.5 pounds (70.1 Kg) this morning, heading down.

Further, I have requested copies of both PET scans from Mayo, and will make copies and then give them to my new PCP, Dr NB. Depending on his recommendations, a visit to a cardiologist could be in my future as well. I'll probabaly see my naturopathic doctor too, once we know more about the risk.

This has little or nothing to do with myeloma, I know. So if it becomes a big thing, I may start another blog, about heart disease. Uff-da.


Wednesday, March 9, 2011

Best Possible News

Well, the BEST possible news would be if the cancer magically disappeared, but I haven't seen anyone walking on water lately except the locals who fish through the ice. Otherwise the news is all good:
  • IgG is down from 1200 to 1050 mg/dL;
  • M-spike is unchanged at 1.0 g/dL, but this month it actually makes sense;
  • Free light chains are stable, similar to other recent values;
  • A bone-density (DEXA) scan shows a slight INCREASE in bone density. The differences in results are within the measurement error of the machine, but at least the bone density has not gone down since one year ago; and
  • A PET scan three years ago, at the beginning of this study, showed myeloma lesions in three bones. Today's scan shows no lesions. Combine this with good blood-test results for calcium, kidney (creatinine), and hemoglobin, the C.R.A.B. symptoms are all negative, so the myeloma is not symptomatic any more. Cool.
This was the 39th cycle of the pomalidomide drug study at Mayo Clinic in Rochester. Pomalidomide and dexamethasone brought my M-spike down from 2.7 to 1.0 g/dL in just a few months, and has kept it stable since. According to one famous doctor (I can't remember who), stable disease is almost the same as a complete remission. I'll remain on the study, of course, because no one believes that the myeloma will sit still without the pomalidomide.

Happily, the dexamethasone was gradually reduced, and finally stopped over a year ago, and the pomalidomide has been on its own since then. I have mild side effects: Slight neuropathy in fingers and feet, and a reduced heart rate which affects running but nothing else. There is also a risk of deep-vein blood clots, for which I take an aspirin daily. I am happy to accept those risks and side effects in exchange for symptom-free myeloma.

Kudos to Mayo Clinic:

All of the tests, including all of the blood tests, an electrocardiogram, the DEXA scan, and the PET scan, were done in one day, with all results available by the end of the day. What a place. It sounds like bragging, I guess, and perhaps it is, but really I wish everyone could live close to a medical center like Mayo Clinic. I feel blessed.

Actually, I did have the CBC with differential done on the previous day, not because Mayo would have any problem with it but because my neutrophil count is always higher in the afternoon, and my other blood tests are done in the morning. It worked again - the neutrophil count has to be at least 1000 lil' soldiers per microliter, or I have to stop the study for a while, and they were 1610.

Doctor RH:

Dr KDS is gradually going away, which we lament, but alas, it will really happen. She stopped by today, but for most of the appointment we saw Dr RH, who did an excellent job in her stead, of course. We discussed:
  • Recent pain in the left hip. Is this myeloma? Answer: Wait for PET scan results. Later in the day, the PET scan was negative for lesions anywhere, including the hip.
  • Recent pain in the right femur: Myeloma? Same as above.
  • Second primary cancers in stem cell transplant patients on Revlimid maintenance: Dr RH was totally up to speed on this issue, and also confirmed that the "information isn't there" to tell us whether people on pomalidomide maintenance could experience the same thing. Anyway, I think the whole issue may end up being a tempest in a teapot. I hope. There are a LOT of good doctors looking into it though.
Some Current Test Results:

Test    Dec 16    Jan 13    Feb 07    Mar 09     Remarks
M-spike g/dL 1.0 1.2 1.0 1.0 Best tumor measure?
IgG mg/dL 1080 1170 1200 1050 Best tumor measure?
L FLC mg/dL 2.41 2.49 2.47 2.50 L Free light chains
Calcium mg/dL 9.8 10.3 10.1 9.6 Dandy
Creatinine mg/dL 1.0 1.4 1.0 1.0 Kidney, OK
HGB g/dL 14.6 15.3 16.0 15.2 Hemoglobin, good
RBC M/uL 4.23 4.48 4.44 4.40 Red cells, marginal
WBC K/uL 5.1 3.3 4.1 5.3 White cells, OK
ANC K/uL 2.50 1.19 1.40 1.61 Neutrophils, sufficient

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.

Roast bison, quinoa with organic spinach and raisins, organic variety tomatos: