Doctor/patient team fight rare cancer

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By Karen Lee Sobol

I recently learned that the word “patient” shares a Latin root with the word “compassion.”

Any one of us can become a patient, for a number of reasons. For me, hearing a diagnosis of Waldenström’s macroglobulinemia flipped a switch. I became a patient in a big way.

This rare type of blood cancer – there are only 1,500 new cases in the U.S. annually – came with the tag “incurable.” I was terrified. Yet several weeks later, thanks to inspiring people who came my way and internal strength I didn’t know I had, my emotions and attitude shifted. Rather than define myself as a cancer victim, I decided to advocate for my return to cancer-free health.

I looked for an oncologist who was the leading expert in this disease, and would see me first as a person, then as a patient. That was Dr. Steven Treon, one of many talented oncologists who specialize in rare diseases at Dana-Farber.

Before my appointment with Dr. Treon at Dana-Farber’s Bing Center for Waldenström’s Macroglobulinemia, I learned as much as I could about this disease and available treatments. When my husband and I met with him, we all found a common purpose: to treat my cancer, and my body, in the most effective, least harmful way possible.

Because this type of cancer is typically slow to develop, you sometimes have the opportunity to “watch and wait” rather than begin treatment right away. For me, “watch and wait” lasted just three months. Then the disease became life-threatening.

Dr. Treon explained the risks and potential benefits of available treatments. I chose to participate in a clinical trial, with a biology-based experimental drug. This approach, along with holistic healing techniques and support from my family and friends, brought me back to health.

For 12 weeks I spent many hours receiving chemotherapy infusions. As I observed doctors, nurses, and patients, my respect and compassion for them deepened. I learned that anyone, young or old, of any lineage, can become a patient, and I noticed that one person’s success can lift everyone’s hopes.

Recently, Dr. Treon and his team of researchers identified the gene mutation which is present in the majority of patients tested. New drugs are in development, and within three years more clinical trials are anticipated.  Cure seems to be within reach, due to the teamwork of patients and physicians.

I am most grateful to be in complete remission now. Based on my experience as a patient, I offer some advice.

  • A well-informed patient is his or her own best advocate, and the physician’s best ally.
  • The mind-body connection is essential to good health.
  • The value of clinical trials with targeted, biology-based drugs, cannot be overstated.
  •  Being a patient – particularly for a serious illness such as cancer – can invoke many emotions. It also gives us an important role to play. It does not define who we are, but invites us to live with greater compassion.

Karen Lee Sobol is an artist, author, and advocate for research and education in Waldenström’s macroglobulinemia.

4 comments

  1. [...] Big news this week from the lab of Dr. Stephen Treon, the lead physician-researcher in Lee’s experimental treatment Dana Farber. Read about it in her words, here. [...]
    http://www.artspractica.com/2012/08/i-didnt-know-if-we-could-fix-it/

  2. Denise Friedrich says:

    I was diagnosed 5 years ago with WM and have undergone chemo, biological treatments and am currently undergoing IVIG treatments for immune suppress syndrome, hypogammaglobulinemia treatments with fair results. Am I eligible for clinical trial?

  3. Denise Friedrich says:

    Please reply on above comment.

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