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Overview Of ASH From A Patient’s Perspective

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Overview Of ASH From A Patient’s Perspective

I just finished a post about how I try and write from a patient’s perspective. I want to be positive and hopeful whenever possible. We all like and need good news! But I also want to be honest and forthcoming with my information.

After spending four long days in New Orleans, attending clinical study presentations, walking the rows of posted data, meeting with drug reps, oncology docs, representatives of the IMF, researchers, clinicians and anyone else I could speak with–here is my “insider’s perspective.

The bottom line: Like the song says, if you are a newly diagnosed multiple myeloma patient, the news is indeed so bright “you have to wear shades!” There is more progress being made in multiple myeloma therapy and research than any other cancer. How exciting is that! I spoke with a general, medical oncologist who has been working with patients for four decades. He flat-out told me there have been more positive changes in the way he can help paitients during the last three years than there have been for the previous thirty-five years combined! The number of new drugs being studied, approved and developed is growing exponentially, month by month, year by year. You could feel the excitement among everyone here! But–and there is a but–part of this progress isn’t real.

Let me explain. My take on this is: Thanks to the Internet and direct patient marketing and blogs like mine, patients hear about possible therapeutic advances much earlier than a patient would have in the past. Ten years ago, patients wouldn’t have learned about a new drug until it was available for general use. Even then it might take a year or two to filter down to grass roots oncology professionals. Now, we are seeing data and getting excited about drugs and therapies and research which is often many years away from FDA approval. True, many more clinical studies are available than in the past. So, if you meet the criteria for one of those–great! But due to geographic limitations, or affordability, or pre-existing or overlapping conditions which exclude you from participating in some clinical studies, they are not the answer for all patients.

Be positive, hopeful, grateful and encouraged. But also try and be realistic. Help is on the way–it may just take longer than you or I would like!

Feel good and keep smiling! Pat