Imetelstat....real life story

[jingledsassy]

post by Pharmanot [Irish Trader 52 on geron message board 12 hours ago....John is alive and waiting for more Imetelstat....4 years since being told he had a year to live....one of the original Mayo CT patients

[cheng_ho]

Uh, didn't we hear that "John" DIED a long time ago?

[scottmayhew]

yes. we did hear that. a classless and misleading post on pharmanot's part.

[biopearl]

Jingle, what you have posted is very relevant in terms of history but is unfortunately not current. I was honored to communicate directly with Irish for a few years while John was receiving therapy at Mayo. His progress was remarkable and he did go from advanced disease to CR/PR status. Unfortunately at that time the Tefferi study required that he travel from the southeast US to Mayo in Rochester for each treatment. They would not allow him to receive infusions closer to home. Also he got locked in to a dose of 7.5 for reasons enumerated by Irish in other communications, again related to the partial clinical hold, which are in the public domaine. Both MTB and I have communicated Irish over the years. John died last year. MTB very kindly provided me with his obituary. He was a remarkable man and both he and his wife served our country with honor. I wish he could have been better served by our FDA but I believe, and this is my opinion only, that he got caught in the vagaries of the partial clinical hold imposed by the FDA several years ago. I wish the information you posted was current but it is not and I suspect there was no way for you to know that without following his progress over the years and without direct communication with Irish. It has been a long time since Irish and I corresponded. I hope we might hear from her on this forum. We owe them both a lot as they were willing to share very personal and painful experiences with us. Regards, bp