Tuesday, April 20, 2010

Minnesotadon Is Now on Twitter

Big deal. I'm not yet sure why, actually. I used Twitter for the first time on Monday, April 19, to keep track of the Boston Marathon. I liked that. Then I found out how to have the title and first few words of each new blog post sent to Twitter, as if I had "tweeted" it.

We'll see what comes of this. Twitter seems to be a good way to keep track of people if both are on-line and on Twitter, or if one is on Twitter and the other one posts to a blog. Otherwise, email might be better.

Don on Twitter (opens in a new window)

Monday, April 12, 2010

Pomalidomide Side Effect?

Pomalidomide keeps my cancer stable, but has significant side effects:
  • Bradycardia (reduced heart rate). This doesn't bother me, but it does some people.
  • Blood clots. These can appear as deep vein thromboses (DVTs) or pulmonary embolisms. They are life-threatening, but I haven't had one. I do take an aspirin a day.
  • Peripheral neuropathy. The bottoms of my feet are numb in some places, and I have one thumb that tingles. From what I hear, my neuropathy may be fairly typical.
  • Neutropenia, which is a low neutrophil count. Neutrophils are a major front-line fighter in the immune system, and without them we cannot easily fight off infections.
And I have an infection. At least four weeks ago, I apparently whacked the back of my hand against something, possibly outdoors working on a tree that we removed and cut for firewood. A bruise appeared, and a red circle around a tiny puncture. In the ensuing weeks the infection spread to three knuckles and the tissue between them, now overtaking most of the back of the hand and causing enough swelling to make it quite impossible to close the hand.

We've tried three different kinds of antibiotics in those weeks, with varying results. None of them reversed the infection, but one or two may have halted or slowed its advance. The one that may have worked the best, Biaxin, was stopped because liver enzymes appeared to go up, one of the risks of Biaxin. Now my local primary care physician, Dr LL, has me on a fourth antibiotic, doxycycline. We'll see how that goes.

Neutrophils may be important here - we really don't know HOW important, because we don't yet know the type of bacteria or fungus causing the infection. People with normal immune systems also get infections, but I sure haven't had one like this before. If necessary, we can stop the pomalidomide for a week and still remain on the study. But the myeloma is stable now, and I really don't want to mess that up!

Otherwise, though, life is wonderful. We three ran another marathon last Saturday.

Kansas in April

Monday, April 5, 2010

The News Is All Good

Stable M-spike and other cancer markers - see the latest post about that.


Last Thursday, April Fools Day, the Mayo Clinic lab reported my neutrophils at 940/uL, well below 1700, the bottom of the reference range, and even below the cutoff of 1000, where the pomalidomide trial protocal calls for a reduction in my dosage of pomalidomide. So we re-tested today, at Stillwater Medical Group, and got a count of 1500/uL. That's good - Mayo already called and told me I could stay on the protocol.

But I'm quite surprised that the neutrophil count can jump up that much in just four days. I heard that the count can be improved by exercising before the blood draw, so I did some pushups, a few flights of stairs, and some runner's stretches before heading off to the clinic. But even if that helped the count, is it a true indicator of "neutrophil power" or did it just improve the count temporarily? Your guess is better than mine.

I run about four days a week, but lately haven't been doing any deliberate exercise the other three. If exercise really does help with the neutrophil count, then perhaps I should start every day with a little exercise. Yard work is good!

Liver Enzymes:

  • AST: Apr 1 Mayo Clinic 85, range 8-48; Apr 5 Stillwater 27, range 0-40. Down to normal in just 4 days.
  • ALT: Apr 1 Mayo Clinic 112, range 7-55; Apr 5 Stillwater 60, range 8-58. Not quite down yet, but close.
I've had liver enzymes go above the reference range before, and then drop right back down to normal the next month, so I wasn't too worried, though this was the highest they've ever been.

I have a theory about why they were high. AST and ALT are enzymes that are produced by the liver when it is injured, but they can also be produced by injury to muscle and maybe even other tissue. When the blood was drawn at Mayo, I had a bruise and an infection in one hand, the same arm from which the blood was drawn, in fact from a vein that takes blood back from the tissue around the injury. Could the enzymes actually be coming from the injured hand? When I suggested this to local Dr L, my primary care physician (PCP), he didn't even laugh out loud. He didn't agree, but he didn't reject the idea either.

Anyway, the injured hand is getting better, if very slowly, and this time I had the blood drawn from the other arm.


Mayo suggested, though not too strongly, that I might want to start taking alendronate (generic Fosamax) to reduce the risk of breaking a bone, which would likely put an end to my running. But there are risks and possible side effects, some serious. Local Dr L and I discussed this at some length. My T-scores range from -1.1 to -1.7, mild to moderate osteopenia (not osteoporosis). I have no family members with broken bones, or any other risk factors except two years of steroids (dexamethasone). The normal guidelines would not call for treatment at this time. Myeloma is not normal, however, it breaks the rules and sneaks up on us. Dr L thinks we should deal with this by checking the density at least once per year.

For now, no bisphosphonates. I'm OK with that.

Oatmeal underneath, pineapple, papaya, blueberries, kiwi, mango, really big strawberries, kefir, walnuts. Mostly organic.

Saturday, April 3, 2010

April Fools Test Results

Thursday, April 1, was the end of Cycle 27 of my trial of pomalidomide (previously CC-4047). The cancer has been declining or stable for more than two years now, and it was again Thursday. M-spike is still 1.0 g/dL, and IgG is down slightly, indicating that the M-spike value is probably correct. So that's good - wonderful even. Worth a celebration!

But some of the other test results are strange.

Liver Enzymes:

The reference range for AST is 8-48 U/L, mine was 85. The range for ALT is 7-55 U/L, mine was 112. They have been out-of-range high before, but not this high. Two possible explanations: (1) I had taken Biaxin, an antibiotic, to treat an infection in my hand, for the three days prior to the blood draw. Liver injury is a possible side effect of Biaxin; and (2) Muscle injury can also raise those enzymes, and I had run pretty hard on Tuesday, which always damages muscle a little bit. No doubt there are more possible explanations that I don't know about.

Dr KDS switched me to Keflex (cephalexin) to deal with the chance that Biaxin is the problem. And my primary care physician (PCP), the local Dr L, will recheck the liver enzymes on Monday.


Dexamethasone (DEX) actually helps support the neutrophil count. Since I've discontinued DEX, neutrophils have trended downward. Last month they were 1290 per uL, this month 940. That's a surprisingly big drop. The myeloma doctors don't want it to go below 1000, so if it stays down there we will have to reduce the dosage of pomalidomide, probably by stopping the treatment altogether for seven days out of each 28. For obvious reasons, we don't want to do that.

We know that other stuff is going on, though. I have a hand infection, I'm taking antibiotics, liver enzymes are high, so PCP Dr L will also recheck neutrophils on Monday. Then we'll worry about the pomalidomide dosage.

Free Light Chains:

Lambda light chains decreased from 2.10 to 1.82 mg/dL, which by itself sounds good. However, Kappa light chains plummeted from 1.06 to 0.27, and the ratio therefore went down from 0.50 to 0.15. Since Lambda and Kappa measurements tend to move together, the sharp decrease in the Kappa value calls the Lambda value into question. I can't make any sense of this. I'm hoping that the Kappa result is just wrong. Wacko. We'll see next month.

Red Blood Cells:

My red blood cell count has been below the bottom of the reference range every month but one since the start of the pomalidomide trial. This time it's just above the bottom, into the normal range, and hemoglobin is up too. Hurray! I have noticed that I can run a little faster too- maybe that's why.

Other Discussion with Dr KDS:
  • Bone Density: Dr KDS had looked at last month's DEXA scan and told Dr D, a Mayo bone-health specialist, that my myeloma is under control but that I am a runner and a fracture would be devastating (like it wouldn't be for anyone!). My densities are:
    • Femur necks: T-score is -1.1, indicating mild osteopenia. Density for each is about 0.93 g/cm(sq). This is down about 3% from 2003, though Dr D didn't know about previous scans.
    • Lumbar spine: T-score is -1.2, indicating mild osteopenia. Density average for L1-L4 is 1.08 g/cm(sq). This is down about 4% since 2003, also unknown to Dr D.
    Dr D suggested Fosamax (alendronate) 70 mg per week, for not more than five years.
  • I have a lot of faith in my PCP Dr L, and told Dr KDS that I would discuss this with him and get the prescription from him if he recommends it. Another topic for Monday.
  • I took chlorophyllin this month, a new supplement, to help boost neutrophils. Since it didn't seem to do any good, and some other results are screwy, we agreed that the chlorophyllin would be stopped right away. Done.
  • I am still taking naproxen sodium (Aleve) 220 mg once daily, to deal with headache and because there is a small chance that it will have some anti-myeloma effect, as Celebrex seems to have. Dr KDS had no problem with this.
Bisphosphonates for Myeloma:

Mayo Clinic and other medical institutions are backing away somewhat from the use of IV bisphosphonates, prescribing Aredia instead of Zometa and limiting the treatment to two years or so. And here you see a recommendation for an oral bisphosphonate (Dr D above) where an IV drug would have been prescribed just a year or two ago. Bisphosphonates remain in the bones for many years, and there is some evidence that overuse can lead to brittleness because the bones cannot renew themselves in the normal way.

Bone doctors estimate the probability of a broken bone with a formula called FRAX. When I put my numbers into the FRAX Calculator, I get a 6% risk of any fracture over the next ten years, and a 1% risk of a hip fracture. That's pretty low, not much above the risk for the general population. But FRAX is optimistic for a myelomiac, because myeloma tends to cause bones to weaken more rapidly than normal, especially in areas where myeloma lesions form. It will be an interesting discussion with my PCP Dr L.

Mayo Clinic Results Are On Line:

If you have ever been a Mayo Clinic patient, you can go HERE to log on and view results. I don't know how far back the results go, but mine are there from my initial treatment at Mayo in March, 2008. Not every result is there - a recent electrocardiogram is missing - but all of the normal (even abnormal) labs are there. You will have to get set up to log in and view your results, though, which involves mailing in a notarized form. Or you can sign up in person at your next appointment.

Some current test results:

Test    Jan 07    Feb 04    Mar 04    Apr 01     Remarks
M-spike g/dL 1.0 1.0 1.0 1.0 Best tumor measure
IgG mg/dL 1110 1180 1130 1070 Variation is normal
L FLC mg/dL 2.18 2.78 2.10 1.82 L Free light chains
Calcium mg/dL 9.6 9.8 10.1 9.8 Below 10.2 is best
Creat mg/dL 1.1 1.1 1.0 1.2 Kidney, normal
HGB g/dL 14.4 14.2 14.7 14.6 Hemoglobin, normal
RBC M/uL 4.05 4.00 4.17 4.39 Red cells, normal
WBC K/uL 3.5 3.8 3.4 3.3 White cells, low
ANC K/uL 1.38 1.22 1.29 0.94 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 Best with a wide browser window. Somewhat technical.
My Supplement Regimen With links to where I buy them.

Oatmeal underneath, of course. Huge organic strawberries, blueberies, kiwi, walnuts, and organic kefir.