A Profile of Hope - Betsy's Story

What has your life with lymphoma been like? 

On January 7, 2002, I was driving on the interstate when my cell phone rang.  It was cancer calling, in the form of an emergency room doctor announcing that he suspected lymphoma. Within days, Dr. Mark Kaminski at the University of Michigan officially diagnosed me with stage IV low-grade follicular non-Hodgkin lymphoma.

Although Dr. Kaminski assured my husband and me that new treatments were on the horizon and encouraged us to remain hopeful, we also learned that there was no cure for this type of lymphoma and that my treatment options, at that time, were limited to chemotherapy regimens that had been used for years. The problem was that chemo didn’t always work, and even when it did, the disease sooner or later came back, with each subsequent relapse requiring stronger drugs until eventually no options remained. 

Without warning, we’d been propelled into unfamiliar territory without a compass or a map, much less the time to get our bearings.  We found ourselves compelled to trust my life to total strangers who were asking us to make choices without our fully understanding the consequences.  Worse, because treatment became necessary soon after my diagnosis, those strangers were giving us little time to make choices. I’ve often had more time to find the perfect pair of shoes to match an outfit!
Dr. Kaminski presented various options, and together we decided I would enter a clinical trial which treated the disease with eight rounds of CVP followed by a vaccine six months later, but CVP was suspended after two rounds when my disease proved resistant. R-CHOP came next, but after five of the planned eight rounds, my disease came roaring back – again. 

While chemo failed to arrest my disease, it did a lot of things it sometimes does.  Among other things, it deprived me of hair, sent me to the hospital with various complications and helped me to forget what day it was. On the bright side, it bought what I needed most – time.

What made you decide to use radioimmunotherapy (RIT)? 

For eight long months, I’d fought a losing battle, but during that time one of those new treatments Dr. Kaminski had told us about became available.  Unlike the chemo I had been taking for months, the new treatment, called radioimmunotherapy (RIT), would be given in two doses a week apart, and because it spared most healthy cells, side effects were usually minimal. 

I’d had enough time to learn that additional chemotherapy was unlikely to succeed.  I also knew that Dr. Kaminski knew as much as anyone in the world about RIT because he developed Bexxar®, one of the two RIT drugs. (Zevalin® is the other.) There is a huge level of comfort when you’re treated by one of the leading lymphoma experts, so when he suggested that RIT was my best option, we put our faith in his expertise and experience. 

Early on the morning of September 11, 2002, my husband and I headed to the hospital for what we hoped would save my life, but our hope could not have been a greater contrast to the somber mood of our country on that first anniversary of 9/11.  As we mourned with the nation during my treatment that day, my husband and I also reflected on how lucky I was to have lymphoma at a time in medical history when a revolutionary treatment became available in the nick of time. Our thoughts turned to the countless scientists who had spent years taking their ideas from labs to clinical trials to the world of business and finance and finally to the FDA.  As we watched the drugs drip into my veins, we marveled that persistent scientists, clinical trial participants, and financial supporters had partnered to make my treatment possible, and we were deeply grateful that their partnership gave us a reason to hope that our future would be bright. Indeed it has been!

What is your current prognosis? 

Since that day, I have remained disease free and enormously thankful to all those who made it possible.

What is your life like now? 

These days, life is a juggling act – by choice - between two very different worlds. My husband and I own a homebuilding company with projects in two states, and my “real job” as sales and marketing director keeps me very busy.     

My other role – the one about which I am most passionate – began to develop the very day that RIT was administered.  My husband and I were so inspired by the many people who made that treatment possible, we vowed that, if I lived, we would play a small part in helping those who would follow in my footsteps. Nearly two years after my treatment, we began raising money, and in three years, small individual donations added up to over $124,000 for lymphoma research! 

But even more gratifying is the contact I’ve had with others who share the disease. Knowing the value of talking with other patients who have traveled the same path, I volunteered to participate in LRF’s Lymphoma Support Network.  I also wrote a book, The Roller Coaster Chronicles, based on the journal I kept during my encounter with lymphoma, and last year, began writing a blog about my experience.  As a result, I’ve had the humbling experience of connecting with many people throughout the country who continually give me strength and inspiration.  I hope that I’ve given them some encouragement and support as well.

Some of the people I’ve met are, like me, living normal, healthy lives because we were the beneficiaries of new and better treatments. RIT is but one example of them, and with LRF’s help, scientists are hard at work on many more, adding promise to hope and making the future brighter for us all.

To see a recent interview with Oliver Press, M.D., Ph.D. about RIT, see page 4 of this Lymphoma Today.

Do you want to help eradicate lymphoma?
Do you want to help those touched by this disease?

If you answered yes to one or both questions, join Team LRF, become an advocate and/or make a donation.