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I’m Proud To Be A Patient Advocate!

Home/I’m Proud To Be A Patient Advocate!

I’m Proud To Be A Patient Advocate!

In response to one or more readers critical of my positive support for the use of novel myeloma therapies, yesterday I disclosed I have never been paid by Celgene to write good things about their drugs, Thalomid or Revlimid. I would like to take this spirit of transparency one step farther today. As a writer, do I have a personal agenda for this blog, or when my wife Pattie or I write on our other Website, www.HelpWithCancer.Org?

No I don’t–at least not intentionally. I will concede that, since Revlimid has worked for me thus far, I am likely to support the use of this very expensive novel therapy agent. Additionally, since I have personally chosen to delay getting a stem cell transplant until Revlimid and other therapy options have stopped working, I am also apt to support the option of delaying stem cell transplantation (SCT). This is only human nature, right?  To write about and support what you know—and what works for you. I know a number of patients who’s stem cell transplants didn’t work or only worked for a short time. I also know some who have suffered serious complications, not to mention a lot of pain and discomfort, after undergoing a transplant. But I also know many patients who’s transplants have worked for three or four or five years.  I am not against the use of SCT! On the contrary, I view this procedure as one of several best available options for myeloma patients. I also support the use of alternative supplements and medicines, such as curcumin and raw diets in an effort to slow myeloma down. But I don’t believe alternative medicine can slow myeloma for long. Most of us need something stronger!

Is Revlimid and Velcade sinfully expensive? Yes! Should these drugs cost less? Yes! But I’m convinced Revlimid saved my life—just like many of my readers who are convinced Velcade or a SCT has saved their lives.

We are all just buying time here—trying to stay alive long enough for the next wonder drug to be invented and approved. Do I believe there will ever be a cure for multiple myeloma? Yes! But even more likely, during the next five years, researchers and myeloma docs will use new myeloma drugs like carfilzomib and pomalidomide and vorinostat to help turn multiple myeloma into a chronic disease, not a death sentence for a majority of patients.

As a patient advocate, my job is to point-out the pros and cons of different therapy options. Most importantly, my job is to trumpet the cause for patient enlightenment—to help patients be well informed and take responsibility for their own care.

Hang in there, my fellow patients! Help is on the way! We all just need to stay alive long enough to benefit. Feel good and keep smiling! Pat