Is Taz on here?

[cheng_ho]

Taz, what's the exact name of that patient FB group? I don't get anything when I search on "MPD Myeloprolferative". Thanks.

[Fishermangents]

I believe it was posted on SA

[irishtrader52]

Hi Fish - I am on here. Sorry for the hiatus in posting. Yahoo posters violated boundaries so your site is much better option - and I finally got into it again. Thanks for the help. John is still traveling to Mayo every 3 weeks for his 7.5 mg dose. His disease has completely stabilized and he is doing very well. He is in the 4th year of the original Mayo study. Basically he was on 15 months - off 15 months - back on 15 months with sustained results (except when off it he deteriorated). I think Tefferi's patient meeting in a few weeks is worth attending if you can - he is always an excellent speaker. As much as we would love to be there, Rochester continues to be our destination of choice. We are still in it to win it. Best to all the faithful imet fans.

[biopearl]

Irish, I am so pleased that you are back and John is doing well. I thought at least one Florida site was on line so you wouldn't have to keep traveling. I thought we didn't hear from you because of some "gag order." Best wishes for continued health for you both. bp

[Fishermangents]

Hi Irish, great to see your here again with the good news about John!

[irishtrader52]

Thanks fish and bio - No, gag order. However, the information is now held much more tightly by JJ and Mayo is not at much liberty to speak. John cannot move to another site at this time. All original imetelstat patients have to continue at Mayo Clinic. We are working on trying to change that decision as we very much want John to move closer to home. However, John would not meet the current Imbark study criteria (thank God we got into the first go round), because he never took Jakafi (another thank God) and the new centers are focused on patients who meet the Imbark and Imerge criteria only. Mayo continues work with the original Mayo "pilot, Phase I" patients. I will stay in touch.

[Greg E]

irish- very glad to have you on here, and to hear that John is doing well. I always wondered how you could put up with the hurtful posts at Yahoo!, but like many people who didn't post, I was always grateful that you did. Rooting for you and John and for happiness for your family became second nature over the long period you posted on the Yahoo! stock board, and quite disconnected with the investment angle. I'm so glad you decided to post here, and I hope you know that in spite of the mean-spiritedness of some there were always many more wishing for the best for you and John and your family. Greg E

[biopearl]

Irish, There really were some hurtful and insensitive folks on YMB and having a moderated board (thank you Fish!!) is a blessing since it was really hard without a library of information and an informed chief librarian (did I mention--thank you Fish!!). Irish, I don't know if you have been following the EMA site but it does look like some progress is being made toward true orphan drug approval in Europe.
Do you and John have a sense for how many patient remain in the original pilot study who are still receiving Imetelstat? I am glad you are still swinging for the fence and wonder is there is any sense that the drug is suppressing MF or if there is any chance that at some point the CSCs might be completely wiped out (I know that's a lot to hope for but we really seem to be in uncharted territory!) Best wishes to you and John, bp

[irishtrader52]

Thank you, Greg. YMB finally tried my end stage patience. Your kind words mean a lot and I know there were many more ethical investors on that YMB than not. Just needed a rest. When I first posted, I did not expect to be posting this long...expected to post a couple of times and then ASH 2013 good news might come and then no more posts. Yes - thank you Fish for this great monitored place to share. I have been reading your Board since the start but not posting. However, I wanted faithful investors to know all is still well and John long ago exceeded life expectancy with excellent quality of life. Bio - we do have some sense of how many original imet patients are still in study and considering the barriers and longevity of this study I think promising. We personally will never give up unless it stops working (unlikely after all these years even with a start-stop-start) no matter what it takes. I think that the disease modifies and stabilizes in many and in some may wipe out CSC's and more importantly repair if not eliminate the underlying and causative damage. I think for John it will be maintenance treatment like insulin for life. I do not think John will ever die of MF or it's complications thanks to Imet. Remember this is my amateur and uninformed opinion only. Of course, anyone who relies on my opinion to make investment decisions is just foolish. I just add color. Happy Day!

[robtmsstt1]

Thanks, Irish been following GERN for a time but not as long as others. I appreciate as others here do for you chiming in here with the updates you offer I hope that you continue.

[Greg E]

Hi irish,- here's to excellent quality of life! And Fish, here's to you for excellent quality of site!