Shine a light!!

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biopearl
Posts: 367
Joined: Wed Dec 09, 2015 12:12 am

Shine a light!!

Post by biopearl » Fri Apr 28, 2017 2:53 am

Irish, I thought a new topic would be of value. I have already submitted my questions to Scarlett et al (they recommend one question but I submitted three), then Fish added a good one which I hope he submits. If you haven't yet submitted, would you be willing (or someone other shareholder) to ask something like the following: "Given the current unavailably of Imetelstat for new patients with MF (and the no man's land that John currently finds himself in), what is the ethical responsibility that falls to a company such as Geron and/or Janssen to provide drug on a compassionate basis based on data current known (but held closely)?" A simple but powerful question that highlights the need for compassion, ethics, common sense and acknowledgment of the science. It is not about a double blind placebo controlled study. The R/R MF patients are their own control because they have failed all other treatments. It is not a matter of asking the FDA to participate in dubious science. The data already in the public sector should be enough for a sensible leader to guide a process that brings a lifesaving medication to John and to other patients who have nothing else to help them. Irish=Fight!! Remember your petition?? And thanks for the shamrocks. (In the old days of the YMB I was your strongest defender!!, or at least that's how I remember it! ) bp

irishtrader52
Posts: 44
Joined: Tue Dec 15, 2015 2:53 am

Re: Shine a light!!

Post by irishtrader52 » Fri Apr 28, 2017 5:09 am

Thank you! You make an elegant and persuasive argument.On behalf of John, Joanne, the 10-year old, and so many more, thank you! I like the idea of questions at the annual meeting. As our granddaughter now 3 says (some will remember she was born 6 months after John started the Mayo pilot): Great idea, lala! It will be interesting to hear Dt. Scarlet's response / however up to JJ, I think.

My question would be why a pilot patient getting significant benefit for more than 4 years with no side effects could not return to optimal dose of 9.4 mg that produced remission when that dose was decreased in overabundance (and unecessary IMO) of caution at time of questionable FDA hold and even now after Imbark trial imterim data proving optimal dose (again) was released. And, especially when it is proven in this case there is rapid deterioration without it and patient is refractory to everything else.

We do plan to fight - I am very Irish!! My only constraint is I think I need to wait for the Imbark data before the fight begins at full battle strength. The endless trials are finally at a critical juncture and I don't want to upset the apple cart prematurely as so much is at stake for all future patients and investors.

Sometimes flying under radar is good. When it is not, I will fight full squadron.

Yes, you were definitely my first defender the very 1st time I posted and consistent defender thereafter. If you had not, I would have never posted again.

I want 2 things: John to be well again and for the "good guys" to win this one with a big celebration on Turtle Island. Thank you for the bright light!!! A thousand shamrocks!!!
Last edited by irishtrader52 on Sun Apr 30, 2017 1:31 pm, edited 13 times in total.

idomerfeld
Posts: 5
Joined: Sat Feb 20, 2016 7:27 am

Re: Shine a light!!

Post by idomerfeld » Fri Apr 28, 2017 5:30 am

Hi,

i am one of the quite ones. over the last 3 years i am following Geron and imetelstat and became a believer and a "not so small" shareholder, i will be happy to submit the relevant question, can you explain what is the procedure for that.

Irish, I read all your posts, in yahoo and here and i deeply hope that a solution for John in this midd period will be found, personally i would choose fly full squadron, but i am an Israeli ...

biopearl
Posts: 367
Joined: Wed Dec 09, 2015 12:12 am

Re: Shine a light!!

Post by biopearl » Sat Apr 29, 2017 2:18 am

Hi Irish, I can understand your desire to wait for the Imbark data especially if it comes at the European meetings in June, but what if (as implied by Dr. Scarlett) that doesn't happen until ASH in December. I am concerned given what you have said, that that could be a very long time to be off drug. I just can't understand why the Jansen study stopped enrolling unless they anticipate early approval (or they do not plan to support further development of the drug which seems unlikely at this point.) Best regards, stay strong and hang in there, bp.

Dogonenuts
Posts: 40
Joined: Tue May 10, 2016 6:13 pm

Re: Shine a light!!

Post by Dogonenuts » Sun Apr 30, 2017 7:05 pm

Irish, I have been following your and John's story for some time now. I appreciate the update here recently and assure you that you and John are in my prayers. If I can inject a little humor, it is always good for us according to the late Paul Harvey, while us investors are like chickens with an egg as our commitment, your and John's commitment is more like the pig's investment with the bacon!

In all sincerity, I pray that John is able to get back on the drug as there sure seems to be a direct cause and effect here. I have felt like the drug would have been approved by now if not for that FDA hold which was really criminal, both for the patients and Geron. Anyone with the slightest clinical experience and understanding would have know that the LFT elevations were minuscule compared to the threat of the disease being treated.

I hope you will press the FDA as it caused them to approve a drug recently for muscular dystrophy with much less scientific or even anecdotal evidence of efficacy.

At any rate, Godspeed to the both of you,

Nuts

biopearl
Posts: 367
Joined: Wed Dec 09, 2015 12:12 am

Re: Shine a light!!

Post by biopearl » Tue May 02, 2017 5:37 am

Idomerfeld, Shalom, you can write your question directly to Anna K via the Geron web site. bp

idomerfeld
Posts: 5
Joined: Sat Feb 20, 2016 7:27 am

Re: Shine a light!!

Post by idomerfeld » Tue May 02, 2017 7:07 am

thank you biopearl, will do

idomerfeld
Posts: 5
Joined: Sat Feb 20, 2016 7:27 am

Re: Shine a light!!

Post by idomerfeld » Tue May 02, 2017 4:23 pm

done

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