My Myeloma

Updated February 4, 2010

Diagnosis

In late spring, 2003, I went to the doctor with a persistent back pain. As it turned out, the back pain was due to arthritis triggered by chin-ups that I had started months earlier. While looking for the cause, however, the doctor ordered a serum protein electrophoresis (SPEP) test, specifically to check for myeloma, a blood cancer. The test was positive. Then followed a bone marrow biopsy in August, confirming the diagnosis. I stopped doing chin-ups and my back has been fine since.

Disease

Myeloma is a malignancy of the plasma cells, an important part of the body’s immune system. Plasma cells are white cells which produce immunoglobulins designed to attack specific foreign germs and viruses. Myeloma comes in several varieties; mine is “IgG lambda.” This means that some of the plasma cells which normally produce helpful IgG immunoglobulins are proliferating uncontrollably. Eventually those malignant plasma cells will become so numerous that they will injure bones from the inside, and their useless immunoglobulins will injure other organs such as the kidneys and heart.

At one time, a diagnosis of myeloma meant about a 50/50 chance of living five years. While there is still no cure, my own prognosis is clearly better because: (1) my disease was spotted early; (2) I did not require immediate treatment; (3) I am now responding to treatment; (4) my disease is moving more slowly than most; (5) treatments are rapidly improving; and (6) I have already lived over six years and I am still running marathons. In my opinion I have at least five years from now, possibly ten, even if no new treatments are developed. Dr. L at Mayo Clinic does not disagree.

Symptoms

I have never felt any symptoms from my myeloma, only from the treatment. However, a PET scan in March, 2008, showed active regions of myeloma in both shoulder blades and one vertebral "spinous process," putting those bones at risk. They are not broken and do not hurt, but I have "active" Stage 1 myeloma.

Tests

Every month my blood is tested for an assortment of cancer markers, now more than 40 different blood draws. In addition, I’ve had regular electrocardiograms, four bone marrow biopsies, several x-ray bone density measurements, a cardio-pulmonary ultrasound, four x-ray bone surveys, a head CT, and a PET scan. Many of those test results are tabulated in the Test Result Table and some are displayed in Charts.

The bone marrow biopsy (BMB) is still the gold standard test, disclosing the actual amount of malignant cells in the bone marrow. My last BMB, nearly two years ago now, showed that at least ten percent of all cells in my marrow were malignant. But the BMB is expensive and a little painful; simpler blood tests are also good markers of the cancer burden and of the harm that the cancer may be causing. The most important markers for me are probably (1) SPEP m-protein “M-spike,” and (2) Immunoglobulin G "IgG."

Treatment

In 2004 Dr. P at Minnesota Oncology Hematology P.A. (MOHPA) prescribed thalidomide (Thalomid) at the minimum dose of 50 mg/day. It’s a small capsule that you take before going to bed. It seemed to set the cancer back a little, but had significant side effects, including a bad rash, mostly on my arms and legs, which persisted long after treatment was discontinued.

Nevertheless, because the treatment seemed successful, he prescribed the same treatment again for five months in early 2007. Treatment is summarized here: Treatment Table. This time the rash was mild but I felt some occasional numbness in one leg, called peripheral neuropathy, and even had one event which might have been a blood clot in my leg, a “deep vein thrombosis” (DVT), a known complication of thalidomide. Unfortunately all myeloma treatments fail eventually, and thalidomide didn’t do much good that second time around.

I waited two months for the effects of the thalidomide to settle out, while the myeloma continued its slow advance. Then I started treatment with curcumin, a “complimentary” remedy which has shown a modest benefit for some people. Curcumin is a bio-active component of the spice turmeric and is commercially available as a supplement. The dosage proposed as a cancer regimen is 8000 mg per day, much more than anyone would normally consume. The doctor was on board with this treatment.

After two months that treatment didn’t show much benefit. Light chains went down, but everything else was stable or up, mostly up. So I tried Low-Dose Naltrexone for five weeks. After that short period IgG went down 13%, after climbing steadily, test after test, for the previous two years. However, after another nine weeks IgG was back up again and the M-spike was a little higher than it had ever been. Dr. P recommended treatment, but I wasn’t sure it was time yet.

I called Mayo Clinic. There, Dr. L performed a lot of tests including another BMB and the PET scan. Unfortunately, the bone lesions disclosed by the PET scan made treatment advisable, and I started on a Phase-II trial of a brand new drug called Actimid (pomalidomide, CC-4047), an analog of thalidomide and Revlimid (lenalidomide), along with a strong steroid called dexamethasone (DEX). Every 28 days since March 7, 2008, my blood counts have been monitored very carefully because both drugs can cause problems. After the first four cycles, both IgG and “spike” were down by more than half, to levels last seen three to five years before. The results of recent cycles have not been as dramatic - I seem to be on a plateau, with the myeloma fairly stable since June, 2008.

Fitness and diet

I believe that my body will better fight the myeloma if it is otherwise very healthy and fit. The doctors are all quite supportive of this theory, and they specifically point out that bone health is improved by running and weight training. Therefore, I will keep running or biking as long as I can, along with a program of resistance exercises designed to strengthen the specific bones that are under attack by the myeloma, plus Weight Watchers to keep only a minimum of fat on my body. In addition we eat very well here, buying organic foods where organic is most important, and following a very high-quality gluten-free diet. Thank you my sweetheart!

Future

No one knows. There are about 20,000 newly-diagnosed cases of myeloma in the USA every year, and about 12,000 deaths from it. It is the third most-common blood cancer, after leukemia and lymphoma, and there is still no cure for any form of myeloma. Treatments can set it back, but not even a stem cell transplant can cure it; myeloma almost always returns and eventually kills, though the treatments usually kill first. Doctors are starting to talk about treating myeloma as a chronic disease, rather than a fatal one, but this seems quite premature to me because two friends from local myeloma support groups have died in just the last few months. Their myeloma was not chronic.

Regardless, myeloma is certainly getting a lot of attention in the medical research community, and in fact some of the research on stem cells seems quite promising. Powerful new drugs targeted at myeloma are appearing at a rate of about one per year, and many studies, like the trial that I am in, are underway to determine the efficacy of these drugs, alone and in combination with others.

Meantime, hope is the best path. Live one day at a time and make it a masterpiece!