The Road Ahead

The last treatment in the Cytoxan-Dexamethasone-Rituxan regimen was in early March, and I went up to Dana-Farber Cancer Institute in Boston to see Dr. Treon Tuesday a week ago.  He didn't have much to say about the treatments so far, but encouraged me strongly to continue on Rituxan maintenance.  It would be one infusion every three months.  There's no evidence of a buildup of resistance, so that's not a consideration.  The one downside is that it depresses "good" antibodies in addition to the nasty monoclonal IgM that's a marker of the disease.  So some people have increased incidence of infection, particularly in the chest and sinuses.  However, that's generally manageable with antibiotics.  On the plus side, it generally doubles the time to return of symptoms.  So my plan is to go ahead with it.

They also did complete blood work, and that's all good news.  My hemoglobin is over 13 (normal is 12-18), and the IgM is down to 1510.  That's still way over normal (which is 40-230), but it's a > 50% reduction from the high point.  The standard is to treat symptoms (like anemia, or solid tumors, or cryoglobulinemia), and not just the IgM number.  And with the maintenance Rituxan, the number may come down even further.

Other good news: Dr. Treon did a DNA sequence on my marrow and the marrow of 29 other patients, and he found a common gene defect.  He can see a causal relationship between the defect and the disease.  This is exciting news:  once a defect is identified, it's possible to engineer a protein that would switch off the gene.  However, for a disease with so few patients, it might not be economical for a drug company to invent the protein and then go through clinical trials, approval, and marketing.  That's typically an investment of 10s or even 100s of millions of dollars.  On the other hand, the defect may cause other diseases as well, which could boost the target population and improve the economics.

So things are generally positive, given that I have an incurable disease.  From my experience, and that of many others, it is treatable and manageable, even if it stays with you.

[Sidebar: what the heck are solid tumors and cryoglobulinemia?  The malignant B-cells that characterize the disease can clump together into larger masses that can be felt by manual examination.  They tend to occur in the lymphatic system, so swollen glands can be a concern with this disease.  It could be an indication of these tumors.  Cryoglobulinemia is the tendency of the IgM to thicken and become gel-like at low temperatures.  This can cause all kinds of bad things to happen, like difficulty breathing, fatigue, muscle pain, and pain in the extremities.]