The Waiting Game

Yesterday was my third appointment with Regillo. Quite frankly I was hoping for great things. Hoping I would get a definitive answer and it would be positive! No such luck. My ‘answer’ was another “maybe”.

What criteria are they using? No clue. I was told my eye condition certainly qualifies me. Beyond that, I got no inkling of what I need to do to move up the list.

After a year and a half, I am getting more and more frustrated and antsy. If there is a way to become a prime candidate, I don’t know what it is.

Anatomy of the eye-click on the image for more information

I did learn a few things. Contrary to what I read, the good doctor says everyone has a suprachoroidal space (SCS). [Lin/Linda here: the SCS is the space between the sclera (outer part of eye) and choroid (space below RPEs).  It’s important in both clinical studies Sue is referred to because both insert the stem cells into this space; more about the clinical trials below). Not sure why the difference between what I read and what he said. I know I read something about ‘forcing’ (my term) an SCS in guinea pig eyes. They did it by injecting saline solution between the appropriate layers. Maybe the difference is between having a space and having a medically useful space? I might be wrong but I got the impression the delivery system works better when there is fluid in the SCS. Maybe not. Anyway, everyone has one. I am just not sure if you need the fluid to accommodate the delivery system. If you really want to know, check with your eye doctor. I am still trying to piece this all together.

The next thing I found out was the Ocata/Astellas study may resurrect sooner than I was originally told. I had heard two years or more and now I am being told 2017. Sweet.

I was asked which one I preferred. The one I would prefer is the first one to come to fruition! I will be dancing in the streets to be asked to participate in either one of them.

So that is where I stand now. I have been given two strong maybes. Is that a guarantee I will get something or do two nothings equal nothing? It is driving me crazy!

So back to practicing my distress tolerance skills. I have to ACCEPTS my situation. Engage in activities and contribute to others. I have to compare my situation to those of others and be grateful; things could be worse. Doing things to laugh will help me to have opposite emotions and I can push away problems I cannot solve at present. I can also have pleasant thoughts and intense sensations that distract me from my frustrations. It can be done. I have done it for a year and a half. I can keep on.

written 12/16/2016

Review: Sue’s 2 possible studies

This is the one she was originally referred to:

  • Title: Study to Evaluate Sub-retinal Transplantation of Retinal Pigmented Epithelial Cells in Patients With Dry AMD (PORTRAY)
    •  What the title means: They’re testing the transplanting of stem cell derived RPEs in patients with dry AMD.
    • Link:
    • Phase 2
    • Sponsor: Astellas Institute for Regenerative Medicine (was Ocata. It was the transfer of Ocata to Astrellas that suspended this study).
    • Time frame: 18 months
    • Description from To evaluate the safety of 3 regimens of short-term, low-dose systemic IMT as rejection prophylaxis prior to and/or following transplant of MA09-hRPE cells (human embryonic stem cell derived retinal pigmented epithelial).
    • Description in English: IMT is Immunouppressant Therapy; MA09-hRPE is the name of the stem cell product; prophylaxis is action taken to prevent something.  They are testing the safety of 3 different regimens/3 different groups who will have stem cells transplanted followed by the IMT.
    • Primary outcome: Number of subjects with evidence of graft failure or rejection.
    • Secondary outcome: Change in area of geographic atrophy (GA); change in Best Corrected Visual Acuity

This is the one she is also referred for:

  • Title: A Study to Evaluate the Safety and Clinical Response of Subretinal Administration of CNTO 2476 in Participants With Geographic Atrophy (PRELUDE)
    • What the title means: They’re testing the safety of a delivery system which puts the stem cell derived RPEs under the retina. Also, testing the stem cell product CNTO 2476 to see how it affects visual acuity, etc, in participants with geographic atrophy.
    • Link:
    • Phase: Phase 2
    • Sponsor: Janssen Research & Development, LLC
    • Time Frame: 12 months
    • Description from The purpose of this study is to evaluate the safety and performance profile of a modified surgical procedure and custom Delivery System and also to assess the effects on best corrected visual acuity of a single subretinal administration of CNTO 2476 (human umbilical cord tissue derived retinal pigmented epithelial).
    • Primary outcome: Safety and performance Profile of the Surgical Procedure and Delivery System in Participants.
    • Secondary outcome: quite a few related to Best Corrected Visual Acuity; change in growth of GA; change in contrast sensitivity; there are more listed on the study page.

Next: One Year Anniversary: Part 1 What I’ve Learned




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