Sunday, January 22, 2017

Indolent Lymphoma Survey

I have another request for you.

Patients Against Lymphoma (PAL), the organization that runs the Lymphomation.org website, has put out another call for patients with indolent lymphomas to complete a survey. Of course, this includes those of us with Follicular Lymphoma.

The survey asks you to describe the treatments you have received and discussed with an oncologist. It also asks you to describe the type of setting you received treatment in -- a research hospital, a small clinical practice, a private practice, whatever.

The idea behind the survey is to gather more data to help make a case that RaioImmunoTherapy (RIT) is not only worth having, but that new regulations (about which doctors can give it to patients) are making it hard for this treatment to get to patients. So it's important to be clear about not only the treatments you received, but also the treatments that your discussed, especially RIT, and the place you received treatment (and thus the type of training that the doctor probably had).

RIT works. And it's on its way out. One form of RIT, Bexxar, is no longer being used. Another, Zevalin, is in trouble.

The survey will take about 5 or 10 minutes to complete. It's a really simple way for you to do something for yourself and other lymphoma patients.

Thanks for your help.

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