My Myeloma

Updated March 8, 2014

Diagnosis

In late spring, 2003, I went to the doctor with a persistent back pain. As it turned out, the back pain was probably 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, confirming the diagnosis. I stopped doing chin-ups and my back has been fine since, but the cancer remains.

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 bacteria 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.

In 2003, 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 almost eleven 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 were 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 were not broken and did not hurt, but I had "active" Stage 1 myeloma. According to more-recent PET scans, the bones are OK now.

Tests

Every month my blood is tested for an assortment of cancer markers, now more than 150 different blood draws. In addition, I’ve had quarterly electrocardiograms, four bone marrow biopsies, several x-ray bone density measurements, a cardio-pulmonary ultrasound, four x-ray bone surveys, a head CT, and three PET scans. 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, over five years ago now, showed that at least ten percent of all cells in my marrow were malignant. But the BMB is expensive and 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 somewhat 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 potential 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, an “alternative” remedy which has shown a 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 somewhat 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.

Happily, I live only 90 minutes from 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 CC-4047, later named Pomalyst (pomalidomide), an analog of thalidomide and lenalidomide (Revlimid), along with a strong steroid called dexamethasone (DEX). Every 28 days since March 7, 2008, my blood counts have been checked 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. Since then the dexamethasone was gradually reduced to zero, and M-spike has been stable at about 1.0 to 1.2, which seems to be OK. After 40 cycles (three years), a second PET scan showed no active regions of myeloma in the bones. More-recent X-rays seem to show that the lesions have been repaired, and a third PET scan five years after the first also shows no lesions. Pomalyst has been a wonder drug for me. I am not cancer free, but I am free from the effects of cancer.

Fitness and diet

I believe that my body will better fight the myeloma and manage the drugs 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 were 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, low-inflammation, gluten-free diet. Thank you my sweetheart! Sleep is another important part of a healthy lifestyle, and I make sure to get eight hours most nights.

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 may 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 several friends from local myeloma support groups have died in just the last few years. Their myeloma was never chronic. I don’t think mine is either.

Regardless, myeloma is certainly getting a lot of attention in the medical research community - there were 700 abstracts about myeloma submitted for the 2013 meeting of the American Society of Hematology. Powerful new drugs targeting myeloma are appearing at a rate of one every year or two, 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!