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.]

Normalcy!

Haven't posted since October - I guess because the Cytoxan/Decadron/Rituxan (CDR) treatment is going fairly smoothly, and without any particular incidents.  The IgM measurements - the "evil proteins" that are floating around in and thickening my blood - are steadily going down, but not at a particularly astonishing rate.  At diagnosis, the number was 3190 milligrams per deciliter; the normal range for an adult is between 40 and 230.  At the beginning of the CDR regimen, it had gone up to 3363.  They draw blood to test the number at each treatment (every three weeks), and the most recent report was 2146.  So it's going in the right direction.  I saw that report yesterday, at treatment number 7 of 8, and it was from blood drawn just before treatment 6.  So it really shows the effect of treatments 1-5.  That's a drop of 32%, and a drop between 25% and 50% is called a "minor response."  Hence, I'm responding!  If the drop-rate from treatment to treatment continues (about 9% recently), I'll get to the "partial response" range - a > 50% drop overall by the end this regimen.

But that's not the normalcy I'm so happy about.  For the first time since diagnosis, I'm officially not anemic!  Normal range for hemoglobin is 12 - 18 grams per deciliter, and I hit 12.7 on Monday.  Most of the summer and up to the start of treatment I was in the range of 7.5 to 8.5, so this is great news.

I have to keep in mind that this is not a curable disease.  After treatment stops, the symptoms will start to recur at some point.  There's a decision coming up: whether to continue so-called maintenance treatments of Rituxan, with an infusion every three months.  There is some evidence that this increases the time, by as much of a factor of two, until more regular treatments are needed.  But there is no evidence that it increases survival time, which is the gold standard for cancer treatments.  And some people develop a resistance to Rituxan over time, so when the symptoms do return, Rituxan might not do its job anymore.  There are new treatments on the horizon, though.  So some of the factors to weigh are: likelihood of developing resistance; the quality of life aspect of going a longer time without treatment; the availability of alternative treatments; and the cost to the healthcare system.  On this last point: if treatment isn't a hardship - which it hasn't really been - then perhaps the quality of life aspect is not all that important, and why add stress to the system, since survival time is not increased?  Decisions, decisions.

Regarding side-effects: I've had few.  I tolerate the Rituxan well.  The Cytoxan can cause nausea, but I'd say I've really only experienced queasiness.  As reported in the previous post, the anti-nausea pills they gave me were knocking me out, so I've been just dealing with the queasiness.  (My son has provided me with an alternative, herbal treatment for nausea, baked into cookies.  The herb comes from Northern California.  Haven't needed to try them yet.)  The most serious side-effect is that I'm pretty wiped out on either Wednesday or Thursday following the Monday treatments, and miss a half-day of work or so.  Fortunately, the workload permits this, and everyone at work is very understanding.