Introduction

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

Introduction

Post by Dogonenuts » Wed Apr 19, 2017 9:45 pm

First of all thanks for letting me onto this message board.

As an introduction, I have been following Imetelstat since the Mayo paper was made public. I am a physician, though not in hematology, but the CRs and PRs caught my attention, as this is a rarely infrequent claim in the biotech world. I became a fairly large investor over time, so I have been following the story pretty closely for several years.

One of my high school football coaches was to have a knee replacement a few years back and was requesting me to do his anesthesia, but was found to be anemic due to MF. He passed several months later.

Anyway, when I saw there might be a cure for my coach's dz I was immediately curious. Well, it has been a long, up and down trail since. I hope we are near the real beginning for this drug and look forward to the informative posts here. I will try to add only what is noteworthy and will probably have more questions than answers.

good day to all,

Neal

Fishermangents
Site Admin
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Re: Introduction

Post by Fishermangents » Wed Apr 26, 2017 11:41 am

Hi Dogon, welcome to this board and thanks for your post!

I believe those early CR's and PR's are still important guidance lights, certainly now JnJ has decided to continue the trials.

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

Re: Introduction

Post by irishtrader52 » Fri Apr 28, 2017 1:00 am

Yes, that initial pilot does remain important. I read the SA board regularly and am tempted to respond to every other post - especially the negative ones - but also to my friends like hoosier, ptca, fish, taz, bio (and all the good guys you know who you are) - to add color to their comments.I used to love talking science and stocks with all!! However, for my sanity, I resist. Been there. Done that.

I do want to say though that I hope Dr. Tefferi uses John as a case study after 4 years so his amazing results are known. He had 4 normal years on Imetelstat with great quality of life even with moderate high risk, complex karotype, and R/R hydroxurea. Thank you scientists, long-term investors, physicians, patients.

I also want a case study because now in contrast - and in the past weeks since he stopped Imetelstat - he started going down hill pretty fast. He is holding his own. However, now we have seen John after 4 years on it - off it. In our case, imetelstat is the real deal based on our experience now in our 5th year with a ringside seat.

The best way for me to describe my latest observation is: imagine a forest fire under control. Then the firefighters leave and the blaze rages. But, we believe John will survive to get the 1st approved dose if he does not take any drugs that will kill him faster in meantime. He is R/R to everything now and transfusion dependent.

We did leave study voluntarily but that is relative. John has CI (and OS benefit) but CI is not enough to keep getting unapproved drug when pilot is scheduled to end after 4 years. Clinical trials are not designed for good of patient. Research cold and simple. As for naysayers, if you think JJ invested on 1 patient case study, I am laughing out loud. I only posted because our post-imet experience at this stage of game further solidifies our belief in the science.

If I dared, I would post his 4+ year Imetelstat medical
record from Mayo to tell the story. Why I started posting- at the start - because for us it was so amazing and life-changing it was hard not to share with investors and patients. And, patients should read investor boards because they would learn more than on the cancer boards.

In our time together, I told you the FDA hold would come off. I told you the Imbark 4.7 arm was virtually a placebo and outcome was known. I told you we believe in the science. I told you it is smooth sailing to Turtle Island now (but this is Geron so bring a lifeboat).
Last edited by irishtrader52 on Fri Apr 28, 2017 3:59 pm, edited 8 times in total.

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

Re: Introduction

Post by biopearl » Fri Apr 28, 2017 1:35 am

Irish, sorry to hear John is backsliding. Your observations are very important because a serious gap exists for the current patient population with MF similar to John. If the Mayo trial is no longer enrolling (and will end soon), and the J and J trial has not enrolled since September surely someone somewhere can see that there is a group of uncared for vulnerable patients who are at risk (that's an understatement, I should say, to be blunt, who will die). I am glad that provisions are available for John to resume therapy,(despite the huge hassle of travel and expense to you both), but what of the others? Irish you have a voice that can be heard. Would you consider contacting J and J or the FDA to get some reassurance that provisions are made to allow patients to receive Imetelstat perhaps on a pre approval, compassionate basis? (And hey, you mentioned your friends on SA, so what am I chopped liver?) Regards, bp

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

Re: Introduction

Post by irishtrader52 » Fri Apr 28, 2017 1:49 am

Hi bio - thanks for your response. No, there is no provision for John. I just plan to demand it. Sadly, at this juncture the only way for John to continue to infuse Imetelstat again at optimal dose is for it to get approved. So here's to fast track, BTD, accelerated first line treatment for all of us. No new patients or even some old faithful patients will get optimal dose not even as compassionate until JJ gives the all clear. Do not doubt we tried. Trials at crucial stage so we will be patient a little longer. I did not think of you as on the SA board as you always respond to me here in my "safe space". The only thing I can't do here is post shamrocks! So think shamrocks and green shorts! Best always bio.
Last edited by irishtrader52 on Sun Apr 30, 2017 1:14 pm, edited 2 times in total.

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

Re: Introduction

Post by irishtrader52 » Fri Apr 28, 2017 1:54 am

PS Feel free to be blunt. Anyone who has MF is not afraid of the word die. Stayin' alive on the imetelstat fumes.

Ligas3
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Joined: Sat Feb 27, 2016 6:18 am

Re: Introduction

Post by Ligas3 » Sat Apr 29, 2017 5:24 am

Irish,

I do not understand. I emailed Anna and she said that based on investigator discretion (Tefferi) patients deriving benefit from Imetelstat can continue to receive Imetelstat until the study end which isn't until 2019 (the primary completion date is May 2017).

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

Re: Introduction

Post by irishtrader52 » Sat Apr 29, 2017 12:49 pm

Hi Fish and Bio /

Well look who is here...ligas. Hmmm...

I want to clarify for both of you, fish and bio, and other longs to best of my ability. Not sure why Anna would say anything in this regard because out of her wheelhouse and it seems to me JJ does most decision-making. I do remember ligas attributing statements to Geron/Mayo that I knew could not be accurate.

Even if so, "can" stay on and "guidance" to do so are very different for any number of myriad reasons that may have nothing to do with efficacy and did not in our case. John benefited 100% from imetelstat every day he was on it. Without it, he lost all benefit. No other drug comes close. Believe it or don't. You will all know soon enough. I think I will have to take another board break since I am so easily misunderstood. Again, see you on Turtle Island!!!
Last edited by irishtrader52 on Sun Apr 30, 2017 1:08 pm, edited 5 times in total.

Ligas3
Posts: 13
Joined: Sat Feb 27, 2016 6:18 am

Re: Introduction

Post by Ligas3 » Sat Apr 29, 2017 1:55 pm

Irish,

So you can say without a doubt that there is no one in the original Mayo trial that is still receiving Imetelstat?

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

Re: Introduction

Post by irishtrader52 » Sat Apr 29, 2017 6:42 pm

Mr. Ligas, I did not say that at all. Why are you saying it? I clearly said John is not infusing imetelstat anymore - Repeat: I did not mention anyone else and do not speak for anyone else.

I also said (again) John did not stop because of efficacy.

I also said (again) John is doing much worse now for lack of it and was doing great on it every single day he was on it until his last infusion.

Now what part are you trying not to understand? Why are you trying to confuse?

Ligas3
Posts: 13
Joined: Sat Feb 27, 2016 6:18 am

Re: Introduction

Post by Ligas3 » Sat Apr 29, 2017 8:20 pm

Ok. I misunderstood you when you said no one gets it until approved, not new patients or old faithful ones. When I stated that Anna said patients deriving benefit could still receive Imetelstat, you did not say, yes she is correct. You said I don't know why Anna is commenting on that, it's not in her wheelhouse, and JNJ is in charge.

Those statements are a little misleading.

Ligas3
Posts: 13
Joined: Sat Feb 27, 2016 6:18 am

Re: Introduction

Post by Ligas3 » Sun Apr 30, 2017 12:19 am

Also, I would please invite you to post whatever statements that I attributed to Mayo or Geron that were not accurate. Such an attack on my honesty should be backed up with proof. Never did I state anything that Geron or Mayo did that was out of context.

Ligas3
Posts: 13
Joined: Sat Feb 27, 2016 6:18 am

Re: Introduction

Post by Ligas3 » Sun Apr 30, 2017 12:23 am

If you recall, once upon a time years ago, I was no more than a normal board member that you seemed to like many of my posts. I then once asked how you knew John would respond to Imetelstat a second time around if he came off treatment. What I was asking was there any other patients where this had worked and you felt comfortable with discontinuing treatment and starting back up would work. For whatever reason, you publicly called me an Incy Shill and I have been on your bad list every since.

Ligas3
Posts: 13
Joined: Sat Feb 27, 2016 6:18 am

Re: Introduction

Post by Ligas3 » Sun Apr 30, 2017 6:37 am

I do have one other question. Why is the trial scheduled to end after 4 years?

Fishermangents
Site Admin
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Re: Introduction

Post by Fishermangents » Sun Apr 30, 2017 10:11 am

Maybe better to move forward as some things from the past won't be resolved through a MB like this. I would really appreciate you both keeping comfortable here and trying to bring in your knowledge and insights to try to better understand how we can interpret the things we see happening around us. We are in the middle of a rather complex 'game' and we need all opinions and alternative viewpoints to make sense of it.

Fishermangents
Site Admin
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Re: Introduction

Post by Fishermangents » Sun Apr 30, 2017 10:51 am

Repost from Hoosier (SA, 29 April 2017)

Guys/Gals,

I want to vouch for Irish's authenticity as it genuinely bothers me to see her and/or John being subject to such scrutiny. Please know that I've communicated with Irish on multiple occasions, and I've been aware of her legal name, address, workplace, etc going back to Spring 2014. She is real, John is real, their myelofibrosis story is true, and while not perfect, her efforts to share information have been genuinely made in hopes of helping patients and investors alike.

Furthermore, I'll tell you that I am aware of her family's story. A story that has nothing to do with Myelofibrosis. A story that has everything to do with unconditional love of one's family, and being willing to risk it all in support of one's family. A story that will bring tears to your eyes, and leave you in awe of a lady who's shown extraordinary courage to finish a fight that most of us wouldn't have the conviction and/or courage to pursue.

I'll further tell you that John has witnessed & survived very challenging experiences of his own. He, like Irish, deserves our absolute respect. Given their past individual experiences, it comes as no surprise they refused Dr. Tefferi's recommendation to discontinue the Mayo pilot study. It comes as no surprise they refused to leave until John's counts were sufficient to qualify him for his next treatment. It comes as no surprise that John was able to tolerate & persevere though side effects that would cause many patients to drop from the trial. The man is tough as nails, and he's got a woman by his side who simply refused to quit.

Their stories aren't mine to tell, but I ask that everyone show them the respect they deserve. Unfortunately, they find themselves facing yet another challenge involving John's continued (or not) Imetelstat treatments. Instead of nitpicking every word in hopes of blowing holes in their story, we should focus on the big picture and work together in hopes of helping them. Thus, I suggest everyone take a deep breath, hit the reset button, and start over with their thoughts & efforts involving John & Irish.

Ligas3
Posts: 13
Joined: Sat Feb 27, 2016 6:18 am

Re: Introduction

Post by Ligas3 » Mon May 01, 2017 5:26 am

So I reviewed Irish's post for like the 3rd time and perhaps I made an error. Reading on a phone may do that. I apologize if your post always said "some old faithful ones".

I missed the "some" that makes more sense

Ligas3
Posts: 13
Joined: Sat Feb 27, 2016 6:18 am

Re: Introduction

Post by Ligas3 » Mon May 01, 2017 5:27 am

I also did not mean to repost that entry above

Ligas3
Posts: 13
Joined: Sat Feb 27, 2016 6:18 am

Re: Introduction

Post by Ligas3 » Mon May 01, 2017 5:45 am

The posts above by Irish were edited and make more sense now.

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