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Posted on Sat, Sep 11, 2010 : 6 a.m.

Cancer: 9/11 Every 2 Days

By Betsy de Parry

On September 11, 2002 - exactly one year after nearly 3,000 people died during the worst attack on American soil in our nation's history - I was in a small hospital room fighting for my own life. Faces of mothers and fathers, sons and daughters, and brothers and sisters who were killed in that horrific attack flashed across the TV. Any one of them, I suspected, would have traded places with me that morning, even if that extra year of life meant having non-Hodgkins lymphoma (NHL), a cancer of the immune system that I'd been battling for eight long months.

My disease had cunningly resisted the first type of chemo that had attempted to destroy it and it had mockingly withstood the more toxic cocktail that had followed. Fortunately for me, while my hair was departing my head and I was vacationing in the hospital with numerous complications, the FDA approved a new technique for treating my indolent form of NHL: radioimmunotherapy (RIT).

RIT specifically targets and then destroys malignant cells, and because it mostly spares healthy ones, side effects are minimal. Unlike chemo, which is administered over months, RIT is given in two doses a week apart. Better yet, it had sent the majority of patients in clinical trials into complete, long-term, durable remission. Finally, a better weapon to annihilate the disease that was clearly trying to annihilate me.

When treatment was scheduled for September 11, it seemed irreverent to hope for a personal victory on the day of collective national remembrance, and yet my husband Alex and I did hope. Early that morning, we settled into a tiny room where the drug soon began its mission, and we prayed that it would find and destroy every malignant cell in my body.

Six weeks later, there was no evidence of disease. Alex and I picked up the pieces of our life, fully expecting that RIT would take a prominent place among the smorgasbord of treatment options for this deadly disease. Sadly, we were wrong.

In 2007, The New York Times explained that "oncologists have financial incentives to use drugs other than Bexxar or Zevalin (the two RIT drugs), which they are not paid to administer." The Journal of the National Cancer Institute elaborates. "RIT is far from ideal for the medical oncologists (who) must refer patients to radiation oncologists or nuclear medicine specialists and then coordinate treatment. This involves more effort...and it means less money...So RIT, viewed from the standpoint of the medical oncologist's convenience and financial compensation, has problems."

Memo to oncologists: having lymphoma is inconvenient for us patients, too, and the value of our lives trumps your compensation.

It would be one thing if RIT were simply a ho-hum treatment, but scientific studies show that it produces more complete responses and longer durations of response than any other single treatment that's available. Yet eight years after winning FDA approval, the two RIT drugs are still caught in the health system's for profit stranglehold that has limited access to between 5 and 10 percent of the patients who might benefit from them. That's like sending the finest emergency crews and state-of-the-art equipment to rescue 5 to 10 percent of the victims of any tragedy and sending the bucket brigade to help the rest. Wouldn't we all be outraged? Just as maddening, targeted therapies like RIT have been hailed as the future of cancer care, but interest in developing RIT drugs for other types of cancer has waned because the RIT drugs for lymphoma have not been commercially successful.

Cancer claims 1,500 Americans every day. That's 9/11 every two days. And it's simply unacceptable, especially when lifesaving treatments like RIT are available for some.

Yes, I'm grateful that eight years ago today, RIT restored my health and kept my family whole, but my celebration is tempered with respect for the families who lost loved ones on that tragic morning a year before RIT rescued me. And my individual triumph over cancer is overshadowed by sorrow for the families who will suffer so long as profit takes precedence over people.

Betsy de Parry is the author of The Roller Coaster Chronicles and host of a series of webcasts about cancer, including an episode about RIT on October 14 with Dr. Mark Kaminski, the University of Michigan physician who co-developed one of the RIT drugs. Find her on Facebook or email her.

Beginning next Friday, Betsy will examine the experience of illness and the process of recovery in The Roller Coaster Chronicles blog here at


Betsy de Parry

Tue, Sep 21, 2010 : 11:43 p.m.

Rork, Thanks for your comment. I hear what you are saying about OS. Unfortunately, the various chemotherapies have not been compared head to head with RIT and it is unlikely that they ever will. But there are several things that are known. The indolent lymphomas are marked my multiple recurrences. Chemotherapy usually slows the disease for periods which vary among patients, but invariably the disease returns, requiring treatment with stronger drugs. Studies have shown that remission periods and response rates decrease with each successive treatment. There is evidence that achieving a complete response (CR) is an important factor for extending remission periods and for improving the survival of patients with low-grade lymphoma. Researchers from several institutions performed a meta-analysis of trials and reported following CR rates: 79% - Radioimmunotherapy 53% - Chemotherapy regimens with the addition of Rituxan (a monoclonal antibody) or Rituxan alone 37% - Chemotherapy regimen without Rituxan A study using Bexxar as the sole treatment and as initial therapy showed that 75% of the trial participants achieved a CR and that the median time to progression of disease among them was 10.9 years. I personally know patients who were in that trial and have been disease free for as long as 14 years! Not a single study has shown any treatment to produce the CR rates that RIT does, nor anywhere close to the remission periods which are often measured in years. And yet, many oncologists have indeed jumped on the bandwagon of new treatments, including one which was approved in October 2008 showing a CR rate of 39.6% when combined with a monoclonal antibody and a time to progression at less than half of that which has been shown in RIT studies. Fortunately, here in Ann Arbor, hematologists are very familiar with RIT and have not been reluctant to use it when it is appropriate. Additional benefits are the short treatment time of only one week and the minimal side effects, including no hair loss. We can get back to our lives faster and easier. And finally, studies have concluded that RIT is cost-effective when compared to alternative treatments, noting that superior response rates reduced the frequency of treatment by increasing the periods of remission, and thus the cost per disease-free year was lower. And one would think that insurers would love any treatment that can extend periods of time when no money is spent! In my own case, the cost of my RIT treatment, including all the scans and other tests associated with it, was $36,929 (or $4,616 per disease free year) - a bargain considering that the cost for all the treatments that didnt work, for treating numerous chemo-related side effects and the hospitalizations that were necessary because of disease progression and chemo-related complications, was $162,410. So to address OS, survival is, of course, the goal that we patients want most. In the case of RIT, plenty of data has accrued since the first clinical trials 20 years ago, and it all points to improved survival. Maybe its time to re-think the way trials are designed but thats a whole different discussion! :)

Rork Kuick

Tue, Sep 21, 2010 : 1:24 p.m.

I am no Bexxar specialist, but the JNCI article points out that the clinical trials that may show Bexxar beats chemotherapy plus rituximab (perhaps you count that as not "a single treatment" but it is the standard of care apparently) have not been completed. Bexxar has not been shown to be superior in terms of overall survival is my understanding. If that can be shown, it would probably make a difference. So maybe it's not just profit stranglehold, but that folks do not want to use new treatments unless the evidence that they are actually better is solid. Most reports of early success with new compounds do not withstand the test of serious clinical trials. Let's hope this one does and shows Bexxar clearly works better, since that will mean improved outcomes for the patients, an indisputable good thing.