A view by a patient and investor

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karagozoglu12345
Posts: 61
Joined: Wed Oct 03, 2018 12:48 am

A view by a patient and investor

Post by karagozoglu12345 » Tue Dec 08, 2020 8:09 pm

I have been a Geron investor since shortly before J&J discontinued the partnership. I have since viewed my investment purely from the lens of an investor until my diagnosis with AML back in June 10 which by far was the worst day of my life. After initial shock and good deal of fear I have been in and out of the hospital for induction and two consolidation chemo treatments and over a month ago I had allogeneic bone marrow transplant one day after the completion of high intensity myeloablative chemo. I have to say the transplant process is by far the hardest experience I have had in my whole life. And, the process will not be complete until May of next year. I will spare the details but it involves, at least in my case, significant amount of ongoing suffering but for a good cause: According to my doctor, 60 % of transplant patients are relapse free for 365 days, and those that make it to 365 days, 89% of them go on 365 more relapse free days, and, those who make it a 2 year mark without relapse, they are considered cured. When I invested in a blood cancer company, I never ever taught one day I may be a victim of this vicious disease myself for having good genes (my mother will be a centennial in March of next year), being a gym rat, and being passionate about eating clean and organic. So, I never was able to see the new drug development from the eyes of the patients, but now I clearly do.

Being humans, even the smartest of us, can sometimes be locked into a specific pattern of thinking, have our heads in the sand, and not be able to see the forest for the trees. We can justify all we want but the reality of it is after ten presentations in ASH share price went south. Clearly, no matter how its sliced market is not excited about Geron’s prospect. With little research we can find many instances where share price has rocketed after great clinical trial results in a conference. I will go out on a limb and venture to guess, no offers for a buyout or a partnership so far either. The MF and MDS patients I have talked to at the hospital and infusion center, including my oncologist, no one has heard about Imetelstat, but just about every one is excited about Car t. Patients seek great results that give them hope. Don’t tell a patient there is a drug that affects the malignant clone but has a low complete remission record with side effects. It might be scientifically exciting but a turn off from a patients’ view. If I am an R/R patient, I would rather choose a palliative care than a drug with lackluster effectiveness with a myriad of side effects. While extending my life surely is invaluable, how much suffering I have to endure from the side effects of the illness plus side effects of the drug really matters! You have to personally experience such kind of suffering to understand what I mean.
In all, I believe whole-heartedly that Imetelstat as a single agent does not have a promising future ahead. By the time phase three studies are complete in MF and MDS indications, there will be much more exciting and promising possibilities (Car-t, gene therapies and other trials at MD Anderson, Fourty Seven combo, and others such as AML vaccine that showed unprecedented results in animal studies) will be available or well advanced in the clinical trials. Very exciting ones may even be available for compassionate use. I do think Geron should radically shift its strategy to seek a synergistic combo with the right immunotherapy drug before its too late. Time may be on our side now to accomplish this but opportunity window will not last too long. With exciting initial results, we will be trading multiples of the current share price and big parma may line up to do business with Geron. Insisting on the current path might end up with huge sunk costs and disastrous consequences for the investors. Thinking this will never happen is to think the science will stop and wait for Geron to succeed.

biopearl123
Posts: 1670
Joined: Fri Jul 20, 2018 5:13 pm

Re: A view by a patient and investor

Post by biopearl123 » Wed Dec 09, 2020 6:09 pm

karagozoglu12345, thank you for sharing your experiences with the board. We can only wish you a speedy and straight road to recovery. As you know the board was started by Fishermangents some time before he death from myelofibrosis. Fish and his son Fish Jr. asked me to moderate as his illness progressed. Fish was never able to enroll in an Imetelstat study since he lived in Europe but was a strong proponent for the development of Imetelstat. IrishTrader56 was also a poster who managed to get her husband into the Mayo study several years ago. She shared his labs and his remarkable improvement on Imetelstat with us. Her husband was a war hero. Because they lived in Florida and there was only one site at Mayo at the time he needed treatment, he eventually dropped out of the study. Today if a patient wanted to try Imetelstat there would be no vehicle for it until the new study is up and rolling. This study will not be completed until 2024 (or perhaps earlier if the first look is positive). Nonetheless we have Janssen and the FDA to thank for the glacial progress toward approval. Seeing the pain and sacrifice required to travel the road Karagozoglu12345 is on is difficult. I wish patients had more alternatives and a speedier path to newer treatments. Karagozoglu12345 observations about the market view's Geron speaks for itself. Perhaps better alternatives are emerging. I can only hope Geron management and science staff will address these concerns in upcoming presentations. In the meantime we wait for the studies to enroll and look for more translational data for reassurance. bp

cheng_ho
Posts: 202
Joined: Sun Apr 03, 2016 11:27 pm

Re: A view by a patient and investor

Post by cheng_ho » Wed Dec 09, 2020 8:16 pm

Best of luck to you karagozoglu12345 with your transplant process.

Be careful about catching anything while you're immune-suppressed, of course. Take your Vitamin D etc.

https://clinicaltrials.gov/ct2/show/NCT ... w=2&rank=2

biopearl123
Posts: 1670
Joined: Fri Jul 20, 2018 5:13 pm

Re: A view by a patient and investor

Post by biopearl123 » Wed Dec 09, 2020 11:24 pm

It just is so troubling to know that years ago this drug was being considered for compassionate use.

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