Since my last post was an article by Karl Schwartz, President of Patients Against Lymphoma (and Lymphomation.org), I'll keep the streak alive and post something from Betsy de Parry. Both Karl and Betsy, through their writing, were incredibly helpful to me when I was first diagnosed, and trying to learn more about my disease.
A few days ago, Betsy posted on Facebook that she was celebrating 14 years since her diagnosis with Follicular Lymphoma. 14 years! That's awesome.
To celebrate, Betsy posted a link to a video of a speech she gave four years ago, as she celebrated her 10th year. The speech was given at a Patient Education Symposium called "Follicular Lymphoma: On the Road to Cure" at Rush University Cancer Center in Chicago. She discusses her own story as a Follicular Lymphoma patient, the success she had with the RadioImmunoTherapy treatment Bexxar (yes, the one that isn't available anymore -- have you sent your email to the Senate HELP Committee yet?), and the ways she maintains hope.
It's a good video. You can watch it here.
If you're looking for a good read, Betsy is the author of the book Adventures in Cancerland.
Both Karl and Betsy are excellent advocates for Follicular Lymphoma patients, and deserve our praise and support. Thank you, both!\
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2 comments:
Not sure why they got rid of Bexxar....and maybe now RIT. Do you know Bob?
On a side note, ALWAYS good to hear of long term survivors, even though that seems to be the norm these days in the Rituxin era. 14 years is great and still going. Karl Schwartz's wife is also close to a 20 year survivor if I recall. She battled it off and on for about 8 years and has been stable ever since.
I expect the Super-Mega-Stores to have a CAR-T station one day where we stop in for a tune up similar to an oil change.
Bexxar's manufacturer made a financial decision: there just weren't enough people using it to make it worthwhile. Which is sad, because so many people did benefit from it, including Betsy and Karl's wife, both of whom, as you say, have had very long-lasting remissions from it.
I do like the idea of an oil-change-type place for my cancer treatments. 30 minutes, guaranteed, and they'll check the air in my tires for free.
Bob
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