Category Archives: The diseases stem cells could cure

My fun trip to Casey Eye Institute this week, and the results…

So on Wednesday, I sat in the waiting room of Casey Eye Institute again, heart pounding, hands numb with terror where my fingers clutched at the wooden arms of the chair. (And if you think *that* sounds bad, then you should have seen me every time I had to go there four years ago!) I was surrounded by little old ladies in wheelchairs and inching along on walkers, their faces full of stubbornness and determination, with the flashing eyes and set lips of survivors. As usual, there were a couple of children, too. I tried to never look at the children, sitting quietly by their mothers, their faces hidden behind thick glasses, their faces filled with the weary patience of eight or nine year olds who have spent too much of their young lives in doctor’s offices and waiting rooms. There’s a lot more of this type of description in my memoir, but you know, I think we’ll stop there for the purposes of a blog post.

The point is, I went to Casey again, which I have to do twice a year. As usual, I would rather have been chased off a cliff by rabid wolves. But I sat in the chair while the retinal scanner went up and down my eyes; I sat in another chair while the cute and chirpy assistant stuck a dubious-looking metal thing meant to measure glaucoma right up against my eyeball, and I sat in the really fancy chair as I waited for Dr. Lauer to come in and interpret it all. (Hint: meditation mp3’s don’t really help in this situation.) And the news was…

(drumroll)

IT’S ALL GOOD!

Okay, maybe it’s not exactly *good*, but my vision is stable. There’s nothing new going on (which would mean new and bad; definitely not new and good.) The first doctor who looked at my retinas through that horrible bright slit lamp thingy was amazed that I hadn’t needed a new Lucentis injection since 2011. This really isn’t normal, and nobody seems to know why the first injections have held up so long. Of course, nobody ever exactly identified the original disease, either. 😛 So I was set free that day to skip out into the sunshine of the wide world outside OHSU, as people looked at me and wondered if I’d escaped from the psych ward.

But it did make me think about a few things.

Yes, this is good news. But there’s never any guarantee. I really do live one day at a time. And I know how lucky I am compared to a lot of people. Most younger patients are not helped by anti-VEGF drugs at all. It makes me a very impatient patient when I think about all the glowing news in the past few days,. Very little of the gushing is supported by fact. The much-ballyhooed treatment at Moorfields isn’t just in the first experimental stages. It’s also dangerous, invasive, scarring, risky to the survival of the retina, and extremely expensive. Why is there so much over-the-top excitement about it?? It’s exactly like the wet AMD treatment in Japan earlier this year, the one based on IPSC’s rushed to the clinic dangerously fast. The study was abruptly stopped, and nobody ever got a straight answer as to why. Other scientists have skirted the issue, showing a lot of professional courtesy in not confronting Dr. Takahashi, I’m sure, but not much regard for the rights of patients.

It’s hard to wait. But it’s good to know that we are waiting for something that works. That doesn’t set aside the issue of what may or may not happen in Phase II. But it does acknowledge the fact that we know that for the people in the Ocata study, the treatment to date has worked. I, for one, am over the excited gushing surrounding experimental treatments that haven’t even begun to do that much. Because we, the patients, deserve better than this. Everyone going through their own personal hell at Casey on Wednesday deserves better. I believe that we will get it. I have learned to wait, God only knows how. I haven’t been to any mountaintop, but I have seen a glimpse of it. We will get there, and we will do it together. So I say to everyone,… have faith, and hold on!

The Latest Info About Stem Cells and Alzheimer’s

A reviewer on Amazon asked me if I knew anything about new Alzheimer’s treatments in development, which led to this! I don’t think Amazon is letting through links in reviews or comments anymore, so this is definitely the best way to get it.

Here’s a great, brand-new scholarly article about the current state of stem cell therapies being developed for Alzheimer’s (personally, as y’all probably know by now, I think that’s where the cure will come from.)

“Stem cell therapy for Alzheimer’s disease and related disorders: current status and future perspectives.”

The best part is that the full article is available free on Pubmed Central. Here’s the link for that:

Absolutely free full text PDF!

Another thing I know of is some new work with identifying more information about a gene that carries risk for developing Alzheimer’s. The stem cell link is that induced pluripotent stem cells are being used in the process (which is the best use for them at the present time, I think. IMHO, they’re so not ready for clinical application.)

Elucidating Molecular Phenotypes Caused by the SORL1 Alzheimer’s Disease Genetic Risk Factor Using Human Induced Pluripotent Stem Cells.

So take a look at those (especially the first one), and I’ll have Day Six of the UC-Davis conference coming up very soon. 🙂

The State of Alzheimer’s Research

So I just finished Dancing With a Stranger, by Meryl Comer, and… it’s not exactly the feel-good book of the year. She is a caregiver for BOTH her husband AND her mother, and both have Alzheimer’s. Oh, yeah– and she has both of the genes associated with the disease. Just the fact that some people are able to keep going in the face of unbearable problems is hard to believe.

I’ve been looking into the current state of stem cell based AD trials, and here’s what I’ve found out. As of December 2014, there’s not a lot going on at the clinical level right now. There’s one trial in South Korea using cord blood-derived cells, but even though they completed the preliminary outpoint in 2012, there does not seem to have been any information released on what the outcome was, which isn’t very encouraging to me. Dr. Lanza’s article about preliminary interim results in Ocata’s RPE trials for AMD was released months into the study. So, for it to be fully two years after the completion of Phase I, and still nothing… not that great. Another study in China is now recruiting, but I’m not sure how much better that one looks.

There are a few meds in development that look promising… but the problem with drug trials is that there’s a long history of meds looking great for AD until they’re actually released, and then they turn out to not accomplish much of anything over the long term. I’ve seen a couple of drugs really help people in the early stages, but only for about one year (Aricept and Namenda are good examples.)

The most promising thing I’ve seen, IMHO, is Neuralstem’s animal studies on Alzheimer’s. They released results in October, and the conclusion is that their cells “rescued spatial learning and memory deficits in mice with an animal model of Alzheimer’s disease.” The problem obviously is that we’re only talking about mice at this point, and there is, unfortunately, a history of stem cell treatments looking wonderful in mice and then not translating to humans. Still, if I had more money, I would definitely invest in this company!

So that’s pretty much the AD story for now!

Working in hospice , Part One

So today was the wrap party for NaNo (National Novel Writing Month,) and I read from the stem cell book I worked on all through November. (Yep, it’s the planned book on this site, And the Blind Shall See: The Promise of Stem Cell Cures.) It came from the section on working in hospice with Alzheimer’s patients. People were really touched (and I’m not going to try to claim that it was from the amazing writing quality!) No, it’s because everyone can relate to the desperate need for cures for degenerative diseases. And yet it’s basically a situation where even the most educated people never know almost anything about what’s really going on with truly effective stem cell research (like Ocata’s.) If you’ve ever lived with the situation of caring for a relative who has a degenerative disease like Alzheimer’s, you know how utterly draining it is, how much it takes out of you. I saw it every single day when I worked hospice. And it isn’t just older people, believe me. There was one woman I knew who died of MS when she was only thirty-six years old. I’m going to put up a series of posts on working with patients who had degenerative diseases, and there’s quite a range of those. Alzheimer’s, other types of dementia, MS, COPD, severe arthritis, and on and on and on. These might not be the most cheerful stories in the world– but we’re working on a happy ending through regenerative medicine! 🙂