I am currently in treatment for a Central Nervous System lymphoma of the brain--at age 81--and the doctors are unsure whether it can be traced backward to the Waldenstrom's Macro-globulanemia for which I was treated about 17 years ago, by the same Dr. Treon Thomas is referring to. He was then actively seeing patients and--because my IGm levels were low by comparison with others'--he warned against watch and wait (I was experiencing some fairly intrusive numbness in limbs) and started me immediately on infusions of Bendamustine and Rituximab. The latter lasted three years but the former took only four months. Results were excellent until this year when the brain lymphoma appeared. Dr. Treon is a great hero to many patients whose lives he has radically extended. I'm being treated at Sibley Hospital in Washington D.C. with consultation from Dana-Farber. The oncologists in both Boston and D.C. are excellent and have vanquished the lesions in only five infusion cycles. They are unsure if Bing-Neel is involved.
As was the case with Thomas, we discovered these great physicians via the internet.
Thank you, Thomas. I found this fascinating. I especially appreciated the call script. That could be/was very helpful.
The technology has certainly changed since I went searching for info about Nystagmus when my son was an infant 39 years ago, when finding a listserv email group community was incredibly helpful as we began navigating that rare vision condition.
In the United States third world health care system I have found the same thing that you did…you have to advocate for your own healthcare or this antiquated system will kill you.
Thank you for sharing all of this. I admit that I a fearful of where AI will take us, but your story sure gives me hope that it will be much more helpful than I thought Your story was amazing up to now and let’s hope for the foreseeable future.
Thomas, this is a great log. I’m so glad for how it’s turned out. From what I understand of Claude, it may now refer to this blog to answer future queries by other people trying to beat their doctors to a diagnosis. That’s cool.
Thomas, that was fascinating and so thorough. Thank you for sharing all of this information in your very readable manner. I am so glad that AI helped you in this way. I have been a bit leery of AI, but this gives me hope for the good it can do on a personal level. And I am especially glad that you are doing so much better!
Thomas, this is amazing and fantastic. So happy for you that through Al l, you found the right doctor and care to save your eye and your life. Wonderful news.
I am currently in treatment for a Central Nervous System lymphoma of the brain--at age 81--and the doctors are unsure whether it can be traced backward to the Waldenstrom's Macro-globulanemia for which I was treated about 17 years ago, by the same Dr. Treon Thomas is referring to. He was then actively seeing patients and--because my IGm levels were low by comparison with others'--he warned against watch and wait (I was experiencing some fairly intrusive numbness in limbs) and started me immediately on infusions of Bendamustine and Rituximab. The latter lasted three years but the former took only four months. Results were excellent until this year when the brain lymphoma appeared. Dr. Treon is a great hero to many patients whose lives he has radically extended. I'm being treated at Sibley Hospital in Washington D.C. with consultation from Dana-Farber. The oncologists in both Boston and D.C. are excellent and have vanquished the lesions in only five infusion cycles. They are unsure if Bing-Neel is involved.
As was the case with Thomas, we discovered these great physicians via the internet.
Thank you, Thomas. I found this fascinating. I especially appreciated the call script. That could be/was very helpful.
The technology has certainly changed since I went searching for info about Nystagmus when my son was an infant 39 years ago, when finding a listserv email group community was incredibly helpful as we began navigating that rare vision condition.
Thanks for sharing your remarkable story. For accurate information about Waldenstrom macroglobulinemia, please visit https://iwmf.com/join-the-iwmf/
In the United States third world health care system I have found the same thing that you did…you have to advocate for your own healthcare or this antiquated system will kill you.
Amazing
Thank you for sharing all of this. I admit that I a fearful of where AI will take us, but your story sure gives me hope that it will be much more helpful than I thought Your story was amazing up to now and let’s hope for the foreseeable future.
We are always our best health advocate! Thank you for sharing your journey; your writing is wonderful.
Good grief Thomas - be well and continue to take care of yourself!
You’re so smart & resourceful. I’m so glad you’re on such a good path now!
Thomas, this is a great log. I’m so glad for how it’s turned out. From what I understand of Claude, it may now refer to this blog to answer future queries by other people trying to beat their doctors to a diagnosis. That’s cool.
Amazing!
Thank you Thomas! Life-saving advice on navigating the many specialties involved in complex medical issues.
Thomas, that was fascinating and so thorough. Thank you for sharing all of this information in your very readable manner. I am so glad that AI helped you in this way. I have been a bit leery of AI, but this gives me hope for the good it can do on a personal level. And I am especially glad that you are doing so much better!
Thomas, this is amazing and fantastic. So happy for you that through Al l, you found the right doctor and care to save your eye and your life. Wonderful news.
Wow, you really did a great job all throughout this, thanks for writing this.
Your long-ago neighbor, Robin
Great story and I really hope the interventions lead to an improved life. You used AI the right way.