Comments From Our Readers

CURE, Winter 2015, Volume 14, Issue 1

Readers respond to past articles of CURE.

CLARITY ABOUT INDOLENT LYMPHOMAS

Editor-In-Chief Debu Tripathy’s winter 2014 editorial titled “Most non-Hodgkin lymphomas can be cured, but new drugs are needed” is misleading. As a patient who was diagnosed with an indolent, and currently non-curable, form of lymphoma, it is my understanding that 50 to 60 percent of all lymphomas that are diagnosed are of the indolent type. While treatable, indolent lymphomas are not curable and often require a lifetime of treatment when relapses occur. I feel Dr. Tripathy’s failure to even mention this fact leaves people with the wrong impression.

Debra Konrad

Arlington Heights, Ill.

Dr. Tripathy responds: We would like to clarify that, while many cases of lymphoma are curable, low-grade lymphomas, particularly those that are stage 3 or 4, can be treatable, but are typically not curable. We clearly need newer and more effective therapies for these types of cases, as well.

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HIGHLIGHTING BURKITT LYMPHOMA

Your magazine is always enlightening, and the article titled “A Long and Winding Road” was, as well. I was disappointed, though, to see no mention of Burkitt lymphoma. My husband was diagnosed with Burkitt in 2009—stage 4—and was entered into a clinical trial at Northwestern Memorial Hospital in Chicago. The study he participated in evaluated standard Magrath chemotherapy with the anticancer drug Rituxan (rituximab) and the anti-cancer drug Doxil, a newer liposomal version of doxorubicin. My husband recently celebrated his fifth year in remission, and his oncologist has even used the word “cured.” We have been very lucky. I realize this is a rare form of cancer, with only 1,200 people in the U.S. being diagnosed per year, but I hope you will consider including some small coverage on this disease in the future. Thank you.

Deb Korb

Chicago, Ill.

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REIMBURSEMENT FOR LYMPHEDEMA GARMENTS

Thank you so much for your excellent article about lymphedema in the fall 2014 issue (Living with Lymphedema). In your article, you mention that some insurers won’t pay for the treatments. You need to know that Medicare does not pay for compression garments unless they are custom garments. My supplementary insurance will not pay because Medicare does not pay.

Judy Gehman

San Jose, Calif.

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PUTTING A SMALL STUDY INTO CONTEXT

Why publish, without comment, a letter [from Trish Miller, winter 2014 issue] citing some of the results of a very small study of breast cancer patients receiving radiation in the 1960s that concluded 92 percent had arm paralysis after 34 years [Johansson. Timescale of evolution of late radiation injury after postoperative radiotherapy of breast cancer patients. Int J Radiat Oncol Biol Phys. 2000;48(3):745-750]? The study involved only 71 women, and radiation has changed drastically since the 1960s. Doses are much lower today and, in many cases, women receive treatment while lying prone, thus sparing vital organs and nerves. (Here’s a link citing more info about the study: http://www.nursingcenter.com/lnc/journalarticle?Article_ID=630714.) Yes, even today, radiation can cause damage, but the wording of this letter leads breast cancer patients who have had radiation to conclude that there is a very good chance, a 92 percent chance in “fact,” that they will eventually be paralyzed. Is this the kind of message you want to convey to your readers?

Ellen Terry Kessler

New York City

Managing Editor Beth Fand Incollingo responds: Our intention was to allow the letter’s writer to express a suggestion: that patients treated with radiation should be followed longer-term in order to track any late effects of therapy. We agree that we could have provided perspective about the Johansson study by explaining that it is older and may not represent outcomes consistent with today’s radiation regimens. Thank you for sharing that information.

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MOVED BY COLUMN ABOUT BRODIE

I so enjoyed Carolyn Choate’s contribution to your fall 2014 Voices column with her article “Meeting Dr. Brodie.” As a fellow breast cancer survivor, I wept, then reread it with tears in my eyes — and, believe me, I don’t cry easily. How perfectly gracious of her to hunt out and connect with Dr. Brodie. Please extend my thanks to her for contributing.

Linda Wolpert

Boulder, Colo.

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