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.

Neutrophils:

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.

Humpf!

Disappointing Test Results.

Last October my new "everything including the kitchen sink" self-treatment regimen seemed to be producing results, with a significant reduction in IgG from September to October, and a slight reduction in "spike."

Yesterday I received the results from the last nine weeks on the regimen, and those results are not as encouraging:

• IgG up 11.5% to 3000 mg/dL, near the high September level,
• SPEP monoclonal protein (SPEP) is up 11% to 2.05 g/dL, an all-time high, and
• For the first time ever, slight amounts of lambda light chains were found in my urine.

I hoped and almost expected those numbers to go down, not up, so this is a disappointment.

However, the news is not all bad. I have a beer here, but I'm not crying in it :-) Calcium remains low, as does creatinine, both of which are indicators that the myeloma is not yet hurting me. Red cell count is still slightly below the normal range, but up a little from October, and it has always been low. Hemoglobin is fine, as are all the rest of my CBC values. I have none of the C.R.A.B. symptoms. Graphic charts of key test results are here and a huge table with lots more test results is here.

When I look at the charts, it appears to me that even if the myeloma is still increasing despite the kitchen-sink regimen, the increase may have slowed. Two data points are not enough to make this trend clear, but it's a hopeful thought and we live in a world of hope.

My oncologist wants me to start a new regimen of Revlimid and dexamethasone (dex). He suggested a rather high dose to start, in fact, 40mg Rev for 21 days of 28 (if I recall correctly - possibly it was 25mg), and 40mg dex four days on and three off. We discussed the results of the ECOG study which showed that low-dose dex was better in every way than high-dose dex. I declined treatment for now, and told him that I will go to Mayo Clinic in Rochester for a consult. He accepted this very openly, and said that he will be glad to continue to work with me in any way that I find helpful. He's a good guy. I have made an appointment at Mayo for early March, with a doctor that I have met in the past. Happily for me, Mayo is just a 90-minute drive away. Until March I will continue the regimen that I have been on.

My oncologist again expressed some surprise that I still have the energy and ability to run, considering my test results. He has 60 myeloma patients now, and clearly believes that my proteins are going out of control. Nevertheless he has always been supportive of the running, for which I am grateful. Interestingly, when I called Mayo, I told the person making my appointment that I was a marathoner, and later at the end of the call she too said "keep on running!" Last night I was feeling a little mopey and didn't really want to do the 12-mile run that was on my schedule, but I did it anyway and felt quite a bit better afterward. Running is good, life is great!

We also discussed the connection between celiac disease (gluten intolerance) and myeloma. He agreed that there is a connection, and remarked that there is also a connection between celiac disease and Waldenstrom's macroglobulinemia, in which the characteristic monoclonal protein is IgM rather than IgG or IgA. We told him that we were now eating a gluten-free diet, and asked him whether I should get the antigliadin antibody test. He looked skeptical until I mentioned that I have a son with celiac disease, and then he said "we can do it today!" The blood is drawn and I hope to get the results within a week.

I can think of two changes in my habits between the five weeks of apparent success ending in October and the less-successful nine weeks ending after Christmas:

• I cut the amount of naproxen sodium (Aleve) that I use to manage headache in half, to one 220-mg capsule per day, because the low-dose naltrexone seemed to help the headaches too. There is some suggestion in the literature, though, that NSAIDs like Aleve might actually have a modest beneficial effect against the myeloma because of their influence on COX-2. I'm well beyond the extent of my knowledge here, but will go back to two Aleve per day for the next two-month period just in case it makes a difference.
• We changed our diet to eliminate nightshade vegetables, including peppers and tomatoes, in hopes of further reducing inflammation. However, tomatoes have some very beneficial nutritional value as well - in fact they were designed to be eaten and to support animal species, as a way of propagating their seeds. This benefit may not actually accrue to humans, but nevertheless I will go back to eating some tomato, and peppers too, especially in cooked form, particularly as organic salsa or pasta sauce but probably not as catsup. Besides, I like tomato and it is the only thing I have really missed in my recent diet. Sunshine, my beloved dietician and cook, seems to be OK with this.

In addition, Sunshine came across a 2004 University of California (Berkeley) study indicating that 500mg of vitamin C daily reduced the level of serum c-reative protein (inflammation marker) in volunteers by 24%. I have not been taking vitamin C, except in food and the modest amount in my daily multivitamin, but will take 500mg from now on.

My apology for posting this so late. My grandson was in town until yesterday afternoon, and when there is a time conflict between him and blogging, you know who wins! :-)



Friday's (today's) breakfast: Organic oatmeal, blackberries, banana, Don's fruit/berry/nut mix, Hershey dark chocolate, organic fat free milk.


Thursday's salad: Organic salad greens, cucumbers, avocado with lime, Maytag blue cheese, macadamia nuts, blueberries, raspberry vinegar.


Thursday's dinner: Wild-caught Alaskan salmon, organic green peas, organic pitted dates, Hershey dark chocolate. I went back for seconds. Not shown: an excellent oatmeal stout.

Low Dose Naltrexone for Headache

This post is not really about myeloma.

For thirty years or so I have had chronic headache. If I take nothing for it, I have a headache almost all of the time, often so severe that it destroys all enthusiasm for life. I have gone to neurologists, and been treated for sinus infection and on and on, with no result. Happily, though, the headache responds well to pain relievers. Over the years I mostly used acetaminophen and ibuprofen, then got excellent relief from Vioxx, which to my disappointment was soon taken off the market. Since then I have used naproxen sodium (Aleve) with good success. Taking two tablets per day, the maximum non-prescription dosage, the headaches are few and mild.

Then two months ago I threw "everything including the kitchen sink" at the myeloma. "Everything" included low-dose naltrexone (LDN). Naltrexone is an "opioid receptor antagonist," a generic prescription drug used to treat addiction. It blocks the effects of opioids. Taken in very small doses, though, naltrexone seems to tell the body that it is not producing enough endorphins, the body's own opioids. The body responds by producing more endorphins, which is thought to help normalize the immune system. My cancer markers did go down a little at the last test, so it may be working. We'll know more on January 3.



Whether or not it's helping with the cancer, there is another significant benefit. Soon after I started on LDN, which is taken at bedtime, I noticed that I wouldn't get a headache in the night even if I forgot my nighttime dose of Aleve. So I stopped taking the nighttime dose, and now only take one dose per day, in the afternoon, with no more headache pain than before, maybe even less. This is very good news, because long-term use of Aleve can put several different body organs at risk. Cutting the dosage in half should reduce that risk considerably.

The "kitchen sink" treatment also included a change in diet, with elimination of gluten. It is possible that I have an atypical gluten intolerance, and that gluten causes my headaches, in which case the improvement would be attributable to diet rather than LDN. I discount that, however, because: (1) the gluten is entirely gone but the headaches are not; and (2) the LDN produces some other very identifiable effects, including a very sound sleep. Thus my body is clearly producing extra endorphins at night, and a natural side effect would be less pain. I know this from running, which also produces endorphins; I never have a headache while running.

The LDN website makes many claims about the benefits of LDN, but oddly, doesn't mention relief from chronic pain. Some questions & implications:

• Can LDN help with other kinds of chronic pain? (For obvious reasons, it cannot be used in combination with narcotic pain relievers.)
• Can LDN be used to treat depression exacerbated by chronic pain?
• If I took LDN twice a day, could I eliminate Aleve altogether? I can easily test this possibility, but not right now because it might upset my myeloma treatment regimen.
• Do you suppose that thirty years of pain relievers contributed to my myeloma?
• What are the risks of long-term treatment with LDN? According to MedLinePlus an overdose can cause liver failure, but LDN is by definition an underdose.

I'm no more afraid of the long-term consequences of LDN than I am of Aleve. Even if, in the final analysis, it doesn't help treat the myeloma, I think I'll try to get a prescription to LDN for the headache.

First Post

Until now, my running blog Make It a Masterpiece has included posts about both running and myeloma. No one has complained, but I suspect that most of the people interested in myeloma issues don't care much about the running posts, and vice-versa.

As of today, May 12, 2007, this new blog Myeloma Hope is created as my diary for NEW posts related to myeloma. I'm not sure how to move old myeloma posts from one blog to the other, however, so those will remain on Make It a Masterpiece.

Each blog will have clear links to the other, but if you have posted a link to Make It a Masterpiece on YOUR blog, and your blog is about myeloma, I hope you will switch the link to Myeloma Hope. I should have done this long ago.

Each blog will have its own RSS Feed, so you can be alerted to new posts if you care to.